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.

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!