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:
video


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