Tuesday, January 31, 2017

Juliana Update

This update has been a long time coming, sorry about that. 
We have not updated as much as facebook lately for several reasons and I'm sorry that left many of you who care so much for her uninformed! 
It can be hard to "update" when it feels like nothing is changing, and I don't want to sound like "woe is me another awful hiccup day" but then I realize we haven't said anything about them in so long.

So where we are - in a nutshell, 
Not much as changed. 

She continues to hiccup/spasm every couple days. 
There continues to be no noticeable pattern about when or why they begin. (For about 1.5 years I kept a detailed log of what/how/when each day). But once they start we know they won't be stopping for about 24-48 hours. If something random happens that stops them short (like falling and hitting her head lol) and they stop "prematurely" say after 12 hours, they usually begin again the next day and go for the full 24 hours again. They are incredibly cyclical and it's like they follow that cycle no matter what you do. So usually the first night she has them (for example lets say she starts hiccuping/spasming in the morning sometime) then that evening at bedtime we know they will go all night and we won't try anything crazy to make them stop because usually:
1. It doesn't work anyways and just brought a lot of attention to them/stress her out
2. If we stop them that first night they will just begin again in the morning and be worse the following night. 
As the "hiccups" go on her stomach/esophagus begins to get very fatigued and begins to spasm per each hiccup. So for one hiccup it may go out several times looking like a muscle spasm. 

Needless to say - incredibly frustrating for her and our family! 
About 5 months ago she needed to have a crown put in *yes another one $$$$* and we opted for having that sedation in the dental office to spare her the trauma of going through the whole hospital routine once again. We were definitely nervous about it because having your child go under general anesthesia in that outpatient of a clinic is pretty nerve wracking if something went wrong. But after at least an hour on the phone with the anesthesiologist the night before literally asking every question I could we decided to go with it since he had done 100's a year and never encountered a problem. She started hiccuping on the way there but they assured me it wouldn't be an issue. I guess after she breathed into the mask and feel asleep her body went into one of her spasms but this time he said it was over 100 contractions and he couldn't get her oxygen up and it was dropping too low - so he was about to wake her up when her tried one injection of a drug that paralyzes the body and they stopped. 

When he called me in after he said to not call what she has hiccups anymore because it leads doctors/anesthesiologist to put them into a certain category they don't belong in. He said it wasn't quite a seizure but wasn't a hiccup. He called it an entire esophageal spasm. Anyways that's the main reasoning for us trying to refer to them as spasms now! He also asked how we manage them at home since he could see that during a long spasm her oxygen dropped. That for us, is one of the most stressful parts. For whatever reason they get the worst at night after she's had them for a long time. (Interesting to me that they got really bad when he put her to sleep and she has them the worst once she falls asleep.......I haven't figured that out yet) Usually on these nights if we check on her before we go to bed and she's having 5 + spasms per hiccup then one of us sits in there with her and makes sure that she can breath ok. If she has a really long spasm like 20 contractions we push on her stomach and it seems to stop that spasm. I get extremely concerned that we will go to bed and she will have a really long one and pass out - but try not to let my mind go there. And Jeremy is almost always the one that sits in there her these days to be honest, because it just makes my anxiety go - up which is hard to admit. In the beginning, when she would have really bad spells I wanted to be right there with her, but it's like now the very sound of a hiccup makes my heart rate increase :( He is great to give me those moments of protection when he can. 

She also continues to be on the steroids, strong antacids, and  an elimination diet (no wheat, dairy, eggs, soy) for her EOE. This is an autoimmune disease you can read about here
They still believe that the hiccups/spasms have no correlation to the EOE, at least they can't see any right now. She will have another scope in about 6 weeks to see where we are at. 

On top of traditional medicines she goes to the chiropractor, we use essential oils, she's had a year of cranial sacral therapy, and many other "wonder" drugs from natural sources that people have given us. And truly - Thank You! I know these all come from a wonderful place in your hearts to help! We try everything pretty much within reason at this point :) 

We've had quite a lull with appointments lately because frankly, I was pretty tired after the birth of Luke and adjusting to 3 kids!! And what is incredibly frustrating is that since every doctor we see has "never seen, heard or read" about anything like this they really just don't know where to send us. So it usually stops there. We have to continue to push so hard if we want things to move forward which is hard when I am just as in the dark as them about what to do next and when to call it quits. When we go through months like the last 6 months where we've taken "breathers" it's really really good for her sense of well being to not have so many appointments. But then it's very hard to have her tell me her stomach hurts and how she wants her hiccups gone and I realize I have to continue to fight for her to have a better quality of life IF possible. It's so much emotional energy each time to hope for a possible fix/cure/cause and to come up with none. It was a year ago this week where we shared that video of her hiccuping and it was viewed 14k times. While I'm not going to lie, it is very discouraging to get any hopes up only to each time have them fall, The Lord has truly given us peace this year more than any one previous - and that is a gift that gives our souls life. This is awful, but it's not the worst. He can sustain us through this and he will sustain her through it. 

Please pray for her heart in all this. As she is getting older and so much more aware she asks a whole lot more questions. "If I pray will my hiccups stop?" being the most frequent. -- tear--
Pray for us as we guide her through the fact that we have prayed and prayed and he still has her going through this - and for her to know that he LOVES her and sees her in all this. And better yet, he is very near to her in her suffering.

We've also had her begin seeing a child psychologist -- not really our thing at first I was pretty skeptical - but it's been great. She helps Juliana prepare for appointments - particularly sedation's. Jules has shown a lot of OCD behaviors that seem pretty typical with the out of control feeling she has about all going on with her body. Her Therapist has been amazing at working at all this with us. I am grateful we started when we did because it was so painful to watch her struggle sometimes the entire day by things she couldn't get past. Like if she wanted to open/touch the door first she wanted everyone to get back in the car and go back down the street so we could come back and do it right. And then once we got in the house I would look over at her and she'd freak out that I wasn't supposed to look at her until x, y, z. Obviously kids do weird things, I would say if your child shows ocd tendencies don't panic most kids do. They like stuff their way. But when it was getting to this point where it was 5 plus issues and hour I knew it was time to outsource for some help. And I guess it's incredibly normal for kids who'v had situations like this to want to control things in their safe zone = home. Her therapist also helps us know what and how much to tell her about each appointment. Juliana has to heal from past medical "traumas" as well as the ones she continues to need to have. Being held down against my will and put to sleep 11 times in 2 years would probably traumatize me too :( 

To end on a great note - her speech is improving so much! The decision to hire an in home speech therapist was SO GOOD. She has truly come so far!!!! She just needs to work up her confidence that her friends and family CAN understand her now ----- if she speaks loud enough :) 

This girl is a precious gift and we adore her. While we sometimes don't feel up to the task, God made us her parents and entrusted her to us. 
We LOVE APPRECIATE AND NEED all your love and prayers! Thank you friends!

Here's a peak into the binder I created for her:

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Sunday, January 1, 2017

Resolutions 2017

Looooook at this beautiful space right now! My hubby gave me the gift of a couple hours no kids this afternoon and I'm at a local coffee shop soaking it up. 

A little cliche for me to post today but it was actually a great exercise for me to go through the process of thinking through and even writing out my hopes for this coming year. With most, the end of something usually causes us to look back and reflect on what was. I have a tendency to not reflect when things come to and end and continue bulldozing ahead. I'm grateful for the time to sit and think about this last year. What did God do? Where did I grow? How did I struggle? What new patterns have I developed good or bad? How have my kids changed? How has my marriage changed? 

When I think of "resolutions" there are a few things that instantly come to mind. Of course these a more than a quick and easily fizzed out resolution - or lets pray they are - and I my hope is they truly become a life change.

First and foremost - 1. Quiet Time with the Lord DAILY
Every time we have a baby it's really hard for me to get back into a designated time with God. Obviously the weeks after with a newborn are the most challenging, and that's when I know reading a verse here and a verse there is all my brain capacity has energy for - and Jesus is there with me in that as well. But my youngest is almost 9 months old and I've still had a hard time getting that daily daily time. I have lots of good reasons why that's challenging but none of those matter cause my spirit is desperately longing for that time.
 I need it. 

I was chatting with some friends recently about how it seems like lately it's easy to say to someone "oh I know it's so hard I never read scripture either, I totally get it". Almost like now it's the cool thing to say how BAD we are at something too. While trust me, I love that empathy and being in the word/sitting with God is never something to check off a list -- we all agreed as we chatted that it would be so refreshing for someone to say something more like "Oh man, it's SO hard to get that time but it's so so valuable. What do you think you could do to work around that? Can you help me too?" Hebrews 10 says 24 And let us consider how we may spur one another on toward love and good deeds, 25 not giving up meeting together, as some are in the habit of doing, but encouraging one another—and all the more as you see the Day approaching. 
I hope that along with my daily TIME with Jesus, I am able to spur others and and be encouraged on by others to make that time in the word a non-negotiable. Again, not because it's "law" or the mark of being "good", but because it's a joyous time and I can easily feel when I'm not getting it in.

2. Phones Down People. 
I've noticed a big upswing (word?) in my phone usage this year, and I don't like it. Listen, I love phones and I specifically appreciate them when needing directions and also on days when I'm home with littles all day to feel connected to the outside world through social media. I think it's so cool how we can stay connected with people and have a sense of community without even leaving our house..........BUT.........I also see a lot of problems (please remember this is my issue - I am by no means judging your use of your phone or praising your lack there of). I've realized that whenever I'm waiting for an appointment, coffee, food whatever for more than a few minutes I instinctively pull out my phone. It's like our brains are getting more and more wired to need to be entertained all. the. time. Like we aren't able to be still for a minute, alone with our own thoughts, or be bored. Guys, I've even moved the facebook and instagram app to the last page of my home screen INSIDE a folder. Let's hope that helps. I desperately do not want to miss out on things with my children or opportunities around me because my face is in my phone. It also is/can be an addiction and I don't like that thought either. It's like our go to when we are uncomfortable - think about a time you've seen someone or something and just to avoid the awkwardness you pick up your phone! Jeremy and I are working out what this will look like in our home as well. We want to put a time where the phones go away for the rest of the evening. We will see how it all plays out :) 

3. Get Healthy (er)
2016 brought on some health challenges for me that weren't expected and I am still working through. When I'm ready to post about that I will haha. But I'm mostly excited for this year getting my body healthy! I'd love to take up a new activity like running (gag me....I mean......fun?) or dare I say, dance again. I'd have to find some adult class with no mirrors so I'm not humiliated by what I see hahahaa. 

4. Encourage
The Lord has been so good to me. He has put friends around me this year that I can't even express enough thanks for. Even one friend like that would be a treasure. I long to be an encourager by habit. There's no reason to limit or be stingy with our words of praise and I pray that God will use me and my words and actions to bring joy to my friends this year. 

5. Finish books. 
I am TERRIBLE at starting books and not finishing them. I want to finish all those last chapters in books I've have the lack of discipline to finish! I'm working ever so slowly through Dillow's "Calm My Anxious Heart" and am realllllly enjoying it. If you struggle with anxiety in any capacity I encourage you to check it out. She talks so much about taking control of YOUR mind and thought life and laying down the worry and anxieties for God's peace and joy. I'll share more as I get through it! 

6. Blog More
I love this space. Even if just for myself it gets my thoughts organized and my focus realigned many times. It's almost like when you've been in your own head for way too long with something and once you get it down you realize - wow that is way not as big of a deal as I've turned it into in my mind! Words on paper (or screens) can get those thoughts in place. I love to read back from years past as God walked with me through highs and lows. 

Okay that is way more than I planned to put down - I feel like I could go on forever about what I hope would happen in 2017. The coming days are His and I am grateful for all the breaths he's giving to me. This life is a gift - hard, sometimes so hard, but a gift. Knowing the love God has for me and you sets a peace so deep in my heart and I pray it does for you too!

Happy New Year! 

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