Do You Ever Almost Laugh?

       This is probably a strange title, right? Well, it is a weird title. Sometimes I laugh because when something else seems to go wrong or happens right after the last thing, sometimes it is all you can do. This time it wasn't as much out of frustration or being super upset, but because I know God MUST be using us, at least that's what I am hoping. That these constant trials with Oliver would not be happening for no reason, actually I know they aren't.
 In Acts 14:22 it is said, "strengthening the souls of the disciples, encouraging them to continue in the faith, and saying that through many tribulations we must enter the kingdom of God." This is true for our lives here as Christians.

       We went to Oliver's 2 year well child visit and he is growing in length! That is great news because it means his body is making growth hormone, which is what we were hoping for since his brother's body does not. His head is normal too, YAY! We do rejoice in all the good!!! But his weight is another story. He went from 0.26% 6 months ago ( which wasn't where it should have been) to 0.02% this time. This is concerning because to continue to fall even though he is gaining height means something might not be right. The doctor mentioned "failure to thrive" but decided before going forward with testing him already he would put him on a high fat diet for the next 3 months. I did push to get more info out of him, and because he knows we deal with a lot of health issues within the family, he gladly opened up about his thoughts. He said Crohn's (I have it) is a possibility and a few other auto-immune diseases that can go hand in hand with JIA, that start off with causing weight gain issues.  It could also be something entirely not related to auto immune but he wants to wait before doing more tests. 

     I know God has been using these trials in our lives, because many of YOU have reached out to tell us, and it truly helps and encourages us to keep going knowing He is using each hardship for His glory. The joy that comes is amazing! Also, knowing that Oliver is so happy, even when he is going through all this shows us that God is good and is giving him joy. Oliver is still limping off and on but is doing great otherwise. He is so spunky, sweet, and wild. I have been loving every moment because God has numbered our days. Yours, mine, our kids', all of us have only a certain number of days here, so why waste a moment of it? 

    As you heard in my last post I do deeply struggle, but I know, foundationally,  that my God IS always good, has infinite knowledge and cares for my kids WAY more than I ever could. He knows what the future looks like , and is the One who ordained all of it, and He WILL receive the glory for all of this. 

    It is so comforting that my eyes have been opened to these things. What a blessing to suffer for Christ. As hard and humbling and devastating as it can be, I do praise Him for all of it, and I pray you can too. Please pray with us for joy through these things!

"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."

A Letter to Those Who Know Better, but Might Just be Trying to Help

It's officially been a year since we started testing Liam for what we didn't know then to be Growth Hormone Deficiency. It's been about 4 months since Oliver showed his first signs of Juvenile Idiopathic Arthritis. Going through these things as parents is so stressful, overwhelming and confusing at times. It's almost like a grieving process we go through knowing things will never be the same as before a diagnosis. It's hard to know what to do when the doctor sits down and goes over the options, how unfair that we are even in this place! (Some thoughts I've had at one doctor appointment after the other) we are completely overloaded with information while one of us is trying to take in and the other is wrangling a toddler that is tired of pokes and being in one room for longer than 15 minutes. Every single small, tiny issue- like my older son who gets less attention and acts out at home when Oliver hurts and just wants to be held, or the 15th bill for a huge amount that gets set on top of the mountain of other medical bills that are hoping to be paid one day- small stresses that add to the huge ones. Today I finally broke. I finally was so sad and upset that I cried and balled and pleaded with God to come again to this earth for us. That maybe there would be no more pain for my kids, I don't mind going through my pain- having Crohn's- but my kids, please stop this pain. Danny is such a sweet and gracious husband. As he listened and listened to me he said something that I know came from God, he said, " if my kids have to suffer in this life so they don't have to suffer for eternity, praise God." Not that Danny doesn't struggle with our kids suffering, he does, more than any other thing he hates to see his boys suffer but he has an eternal perspective. And that's what I needed. Praise God for that. I also realized that one of my biggest struggles from the beginning of my kids medical issues has been opinions. Even since I became pregnant with Liam. You know, do this not that, feed them this not that, you're a good mom for this a bad mom for that. Those opinions and with parenting I was able to just let it go and not worry about it. But for some reason, with these issues now, it has not been ok. I hear everyday, really, everyday that I need to do something else, something different. That Danny I shouldn't do the steroid shots because they'll ruin our baby's adrenal glands or that these medications they want to give him will kill him (really I've been told these things) or when I'm told to go gluten free or dairy free or sugar free or tomato free or corn free. Or that the pain meds will ruin his liver or that we need to do more testing and that he probably has a leaky gut or too much yeast or not getting enough vitamins. Maybe we are using too many chemicals to clean our house? Please know that I know you're trying to help. Thank you. But to parents that want the ABSOLUTE BEST for our boys, we are doing everything possible to help them. Telling us that we aren't doing a good job or that we are making them sicker is devastating. It makes us question our intuition which has been right every time. You know why it has been right every time?! Because that little voice in my head and heart that pushed me against so many people to test Liam was right and the little voice that told me and Danny to push for testing for Oliver was right. Because it was the fierce and always knowing voice of GOD pushing us. We believe this wholeheartedly. It was NOT us, it was our sovereign God, who is the maker of each cell of our boys and has ordained that they would have these ailments. We trust God 100% with their care and we pray through each and every decision. Please, your ideas are great and we appreciate them but just let them be that, don't push anymore once I say thank you and I'll look into it, please don't bring it up again unless I ask. I am tired and weary sometimes and very sensitive to people thinking this is our fault. Our good God has already used these trials to further His kingdom and if He puts that product that you sell on our hearts we will totally come to you and do our research. You know what helps and encourages and lifts us up the most? When you tell us you're praying. Please pray for us, our hearts, Liam's growth and Oliver's joints. We are so thankful to each person that prays and loves on us. 

5 Week Post Injections Update

      It has been 5 weeks since Oliver's steroid injections. He was so much better immediately after the injections and he was back to being our wild and very happy toddler. I did end up taking him to the pediatrician to check his hip. She told us that the swelling was actually more towards his back, basically where the "love handles" are and it was good it wasn't actually in his hip. She could not find anything painful about it so we are just watching it. The swelling is the same, not more or less so we will just continue to monitor it.

         On Wednesday I thought to myself, "I should update everyone on Facebook and the blog about how great Oliver is still doing!" On Thursday morning Oliver woke up stiff and limping slightly but it faded as the morning went on so, even though the back of my mind was thinking the arthritis is back, we decided to wait and see because it was the first time we've noticed it back again. This morning it was very obvious he was limping right when he woke up and we are bummed. This is how it started in the beginning. He is really stiff when he stops moving for a long period of time (napping or bedtime) and after getting up and moving it fades. We are praying that it'll go away but also praying for God to sustain us while we might be starting this again. 5 weeks is not long enough for him to get another steroid injection. Its too invasive to put him under every 5 weeks to get this done.

      I think we are going to just wait and see how he does day to day since we have a follow up with the rheumatologist on May 31st. We haven't noticed swelling yet which is a great sign. Please pray that God would prepare us for whatever is to come. Please pray that we would be shining lights for Him! God is so good, how He prepares us for what is to come. I have been reading through the Psalms and have had it on my heart to read the ones that focus on God's sovereignty, how much I needed that to prepare for another bout of my sweet baby's pain and arthritis.