Lot's of Joy and Healing

As you can tell we've been MIA for a few...or more months! It has been very busy around here with me and Danny both in school, Danny is volunteer firefighting and working and we are enjoying our boys! Here is an update on Oliver's arthritis.

After starting the Methotrexate-which is an injection we give every Friday (its pretty traumatic for him every time) we started to get discouraged after he was on it for 11 weeks and still not even a little improvement. Just as the doctor said, it can take 8-12 weeks to start working....after the week 12 injection (end of January) there was noticeably less swelling -like none! We were ecstatic! It had been almost exactly a year since Oliver first showed symptoms and he was now pain free! We have kept him on Naproxen too, since MTX and Naproxen in conjunction work better and he's a completely different kid! He will stay on MTX for a year which would be until October and then be seen and we will slowly wean him off, as long as he continues to do well on it. Unfortunately because of the seriousness of the medication he has to have blood work and a check up with the Rheumatologist every 3 months. He is a trooper and gets over the pokes quickly, though we dread it every time. We haven't noticed any adverse side effects from the MTX either! The only side effect we have noticed is illnesses are more common and stick around longer.

We also have him being seen by Liam's Endocrinologist since he is really tiny, 23 pounds and 7 weeks away from being 3 years old. She saw him January and then last week but wants him to come back in September and then she will decide whether to test him for Growth Hormone Deficiency like Liam has. She is thinking his stunted growth has more to do with his body focusing on fighting itself (joints) instead of on growing, and now that it is under control he will start to grow. That is what we are praying for!!!

It has been incredible to see God work through all of this. Deciding to go ahead with MTX treatment was the hardest decision for us. We prayed tirelessly about it. We started to question if we made the right decision when, after 11 weeks, we still saw no improvement. God is so good to remind us to trust, trust, trust Him! The moment we noticed the swelling was gone was a HUGE blessing. We are so thankful for everyone who is praying!

Hello!

It's been a while since I have written and so much has happened. To say things have calmed down in this season of life is just not true. Since last time I wrote Oliver's Cystic Fibrosis test was negative, Praise the Lord!!! His last injections in his ankles worked for just over a month and then the swelling was back. We were really bummed. We met with Dr. Moore in October and after a huge heart battle and the most prayer we've prayed in awhile, Danny and I felt lead to start Oliver on Methotrexate. If you Google it (DONT DO IT) a lot of scary stuff comes up about chemo. Yes, it is a drug used for people with different types of cancer where it kills the immune system. But Oliver is receiving 100 times less of a dose than a kid his size with cancer. It is used to quiet and calm his immune system since the other, less invasive stuff didn't work. Because his immune system is out of control and attaching his joints  something stronger was needed to calm it down. We do it as an injection every Friday and he gets Folic Acid everyday because the MTX (Methotrexate) depletes the body of it. It can take 8-12 weeks to start working and Oliver started having a lot of pain and more swelling at week 5 so he was also started on Steroids for 4 weeks to bridge the gap. He actually is done (as of 3 days ago) with the steroids so we are praying the pain doesn't come right back. He's been super fussy and getting sick a lot due to the immune suppressant part of the  MTX. He's also been potty training and doing really well! All the while all that is going on we have an appointment set up for him in mid January to see Liam's Endocrinologist to check for Growth Hormone Deficiency since he has completely stopped growing. He still weighs 20 pounds at over 2.5 years old. His pediatrician also did some genetic and metabolic testing two weeks ago and we are waiting for those results, hopefully next week. 

Crazy huh?! Exhausting! The one thing that helps is that he has been pretty happy through most of it. The hardest part is when we got to any place that resembles a doctor's office, he gets very very upset. I don't blame him. He has to have blood work done every 3 months while on the MTX which really just sucks. This disease sucks. It's hard watching our two year old deal with all this. We struggle deeply sometimes feeling alone, feeling completely done and exhausted. Balancing Oliver's normal and medical needs and our sweet almost 5 year olds needs is stretching and trying. I was talking to a friend recently who is going through her own medical battles with her babies and she said it beautifully, "I understand what it feels like to be in survival mode and I get that people see the big picture but don't see the little things day to day: the on the go messy lifestyle  the inward battles, the mountain of bills we'd like to disappear on the table, the tears cried in the privacy of home and in the hospital, the many phone calls we have to make to pharmacy, social workers, insurance or doctors and the many phone calls we get from them. I feel behind and sometimes I just let the phone ring and call back later just so I get a break from the medical." She totally gets it. And the love we receive is truly one of the things that keep us going. We truly appreciate everyone that loves on us and prays and says hi and just loves. 

God is making us, molding us, squishing us (but seriously lol) into people who trust Him most. I'm slowly.... very slowly "getting it". He is the God of every moment, every cells, every poke, every tear, every joy, every precious smile and giggle. He is the God of life. I can't tell you how deeply I love Him. I truly wouldn't change this, as much and as deeply as it hurts, God uses the pain and suffering EVERY day. It's incredible! I wake up and immediately pray that He would get me through the next hour with joy while getting breakfast ready and feeding my sweet fussy toddler. And guess what?! He does! He has used these trials in my marriage to make it more than I ever thought possible. The love I have for Danny now surpasses emotional or physical love, it is an eternal truth that God has knotted together. I'm so thankful. Thank you all for praying, and we would love if you would continue to pray. 

Updates and New Things

I haven't written since June! Whoops! So much is going on at our home! Lots of activity and happy kids. Oliver had injections done in late June on his ankles and both his knees and ankles are doing great! The whole process went much more smooth than the first time! We are so pleased and thankful that God is continuing to show us His goodness, and of course to all of you who have prayed and are praying for Oliver THANK YOU! God uses you to heal, encourage and strengthen us!

We have been watching his weight closely as well. Oliver weighed 21 pounds at one point around Jan or February of this year and for the last 6 months he has slowly lost a couple pounds. He was stable at 19.6 for a few months but as of the last week he is starting to lose weight again. We met with his pediatrician about 3 weeks ago and he actually weighed 19.9 (yes every ounce is very important at this point) so he was pleased but cautious. He's had diarrhea on and off for about 4 months so the ped. did a few tests. One came back that he has reducing substances in his stool which lead him to believe he might be lactose intolerant-well, thats an easy fix! He's now dairy free and he gave us a referral to Children's Hospital Gastroenterology because lactose intolerance doesn't cause lack of weight gain/weight loss usually. We have an appointment there on September 1st. We weigh him on our scale at home and a few days ago noticed his weight went down so we made an appointment for yesterday. They weighed him and he's lost 6 ounces in 3.5 weeks, and that's concerning. The doctor decided to do some extra blood work to make sure everything was ready for the appointment with GI and look at any other issues that might be there and he will be sending us to Children's next week to get Ollie tested for Cystic Fibrosis (which he doubts he has but wants to cover all bases, we agree) which can start wth symptoms like his.

Overwhelming, huh? Very overwhelming when we just get his JIA under control. It's so hard as a mom to do this, but something Danny said as we drove away from the office yesterday struck me "this isn't about us, its about getting Oliver well, we feel bad for putting him through it, but it is not about us." He's so right, as much as it hurts us, he needs to be well and though he doesn't understand yet, this is all for his well being.

I understand a lot more these days why being in God's Word ALWAYS is so important. Soaking in His word when things are easy and quiet causes us to have a more firm foundation when trials come about. It's so sweet to know and have comfort that God truly is with us when we are in the midst of things that are hard. Our focus moves from the terror and worry that paralyzes us to God, who loves us more than we can imagine, and already knows what will happen, for our good and His glory. Our focus must be Him. When it is not we cannot look up and cannot breathe and we fall deeper away and deeper into darkness. To go through things like this with our eyes fixed on Him, by His strength alone, causes a peace during the hard stuff, that can only be from Him. We make better decisions and my kids can see that we are trusting God with hard things, the most important. I pray that you see I am not always like that, I struggle with a bad attitude and questions, but God is so good to answer and quiet my, sometimes very loud heart. His comfort is incredible.

Please pray for us as we are going through this, that each person we meet would see Him. And pray that He would heal Oliver as I am confident He can, but we want His will, not our own!
Thank you from both Danny and I for praying, it works and it really encourages us!

New Plans

Let the morning bring me word of your unfailing love,

for I have put my trust in you.

Show me the way I should go,

for to you I entrust my life.

Psalm 143:8 

Many are the plans in a person’s heart,

but it is the Lord’s purpose that prevails.

Proverbs 19:21 

As we have been going through this new season of trying to put weight on Ollie we have been reminded over and over again who loves our boys more than Danny & I. Every morning i try to read from the Bible for encouragement and strength. The first verse (Psalm 143:8) above has been one that I cling to. Refreshment every morning, a reminder of what He has helped me to do that morning, put my trust in Him and that promise that He leads me and holds my life and each precious life I care about in His mighty hands. As we look back at our lives before kids, these things were not how we thought life would be. Our plans held this lie of a picture, this picture of the perfect, easy, fun life, with a perfect marriage, perfect pregnancies and perfect kids. This goes against everything God teaches in the Bible. He promises trials and tribulations, sorrow and hardships.But He also promises our reward is HIM in Heaven. "We have this hope as an anchor for the soul, firm and steadfast."Hebrews 6:19

I went out of town 10 days after Oliver's 2 year appointment where we found out he wasn't gaining weight. When I arrived home Sunday (3 days after leaving) Danny told me he thought Oliver might have fallen out of bed and he was limping and his ankle was very swollen. It never crossed my mind that it was the arthritis. We took him in to the pediatrician Monday since it had been 4 days since it started and the pediatrician did an x-ray. When she came back in the room with the results she said "I've never wished for an injury before, but I was really hoping Oliver had an injury not more arthritis." She explained that there was no injury but lots of inflammation and the joint was very warm, she had called the Rheumatologist already. He also agreed the arthritis was now moving into a new joint and we needed to start Oliver's Naproxen once again. We had an appointment lined up for a follow up from his injections 8 weeks ago, the following Tuesday, so they were ok with waiting until then to figure out a new plan.  He did really well that week on the pain/anti-inflammatory medicine.

     On Tuesday we went in to see Dr. Moore at Children's Hospital. We explained everything to her and she did her exam and saw the swelling in his left ankle even with his medicine. She agreed that this was more arthritis. 

The new plan-Keep Oliver on the Naproxen for two more weeks, if at that point the swelling is not completely gone we will do a steroid injection into that joint. 

So far he has been really painful and swollen the last 3 days even on the Naproxen, which is how things went with his knees. We have switched to Meloxicam and its helping. Yesterday was particularly bad and we noticed his right ankle may be starting to swell. We will continue to wait and pray that things will heal and heal quickly!

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.