Heaven and Hell

It's been a busy few days.  Eli's cold has been in a holding pattern.  He's not getting considerably worse but isn't really getting better either.  I'm so thankful for cough assist and suction!  He has had therapy for the last few days and has done really well with it.  He's learned another new sign and today it looked like he may have combined 2 signs together!  That's huge for him.
The older 4 have 1 more day of school and then they are on spring break for the next 10 days.  We will be leaving for Wichita tomorrow and we will be there until Monday.  I'm looking forward to a few days away and hopefully a bit of time to unwind.

I'm exhausted.  I'm having headaches on a daily basis.  We are always behind on everything.  Like always we are constantly waiting for the next big hurdle.
Currently there are multiple little ones in our community who are really struggling.  1 little one is on hospice and very deeply struggling, another is in the hospital and they are unsure if he will make it thru this hurdle, and a 3rd little one is incredibly sick and was rushed to the hospital.  My heart goes out to these families, so much so it makes me hurt so deeply.  I read their updates and cry and ache.  I wish that there was more that I could do for them, something that I could say to them, but there isn't.  I know that nothing will take away their pain and nothing will make it all better.
That's the problem with Mito.  Nothing will make it all better.
At church on Sunday we watched a video and discussed some of the things.  I took notes of some of the things that "spoke" to me, and for some reason I feel like I need to share some of them.
"This world matters.  Religion is not about transportation to another world"  This struck me as huge.  It's been something I've thought about, using other words, but this so immensely summed it up for me.  This world does matter, and the more we go thru our journey the more I realize how VERY much this world matters.  The here and now.
"Heaven and hell is inside of us, here and now."  WOW.  I've felt this so many times.  I feel like so many days have been a real life hell for us.  The things I witness in my life.  The things that we go thru and that so many families go thru.  These little ones are going thru HELL.  The counterpart to that is there are times I glimpse my heaven.  In Benjamin's smile, in Jace's beautiful eyes, in Emily singing, in Ariana's little twinkle in her eyes, in the way my little man cuddles up against me with his head tucked into my neck.  I feel it sometimes in the quietest moments, in the song that plays at just the right moment.
I crave those glimpses, but sometimes I think I'm so busy living in my own personal hell that I may miss some of them.  I realize this may be, but I'm so deep in my thoughts and feelings and fears that I'm unsure how to move past it all.  I never used to be afraid of things, of life, I used to feel as though I had hope and excitement for life and such.
It never ceases to amaze me the things that Mito has given me and my family and the things that it has taken from us, continues to take from us, and will ultimately take from us.
My heart goes out to these families right now who are struggling.  I hope they can feel the love from all of us surrounding them and their families in these beyond difficult times, in this hell.

Check in

Eli - we have finally gotten to the guessed bottom of what's going on with Eli's blood sugars. The geneticist ordered a pancreatic ultrasound and a bunch of lab work. We had all of this testing last week. We got a call the next day with the lab info. Hs cortisol levels were almost non existent at a morning draw. That's not good, they have diagnosed Eli with a major adrenal insufficiency. They started him on hydrocortisone and his sugars have actually been pretty decent so far. They haven't been good enough to stop the cornstarch but good enough to avoid a central line and Tpn. So we are super happy with that. Eli was scheduled to have surgery tomorrow but in true Eli fashion he got sick. As of right now it appears to simply be a cold but we will see how it goes in the next few days. Docs and anesthesia have said if it stays as a cold he can have surgery in 2 weeks, pneumonia 6 wks, and collapsed lungs 8 weeks. So we will see how it goes. Other than that he has been pretty decent. he has been able to play outside some and go on a few walks, 2 things he really loves. We met with his nutritionist today to discuss some formula changes that will be coming up. We all seem to be on the same page so we will see what his new GI doc says on the 22nd. We also have Afo and smo refits this month, muscle and nerve clinic, neurology, and his next audiology appt. a fairly busy next few weeks.

Ariana - we will be meeting with her school in the next week or two to work on getting an Iep set up for speech therapy. Shes loving school like always. At home she's been enjoying riding her tricycle and is begging for her first big girl bike. We promised her one by summer and she's super excited about that.

Benjamin - he's spending most of his life in trouble lately. It's constant at school and very frequent at home. His teacher ended up calling in the autism specialist with the district and they are trying to work out some plans to help better manage behaviors in the classroom. We met with his behavioral psychologist today and she has a few ideas but not a lot of new Ideas that haven't already been tried. A few of them will require more on the schools part than they are probably willing to do. We meet with the school later this week to hopefully get a new plan set to help. Ben's new respite worker comes 5 afternoons a week and he is working to get used to ben and find ways to deal with homework and bens behaviors. Ben has officially learned to ride his bike and is loving being outside and practicing.

Jace - he's doing good. He just finished up his first runs of the new standardized testing accommodations and we are looking forward to finding out how he did with the new helps in place. He's doing pretty good in school and seems to be actually enjoying some of the class work and the things they are learning. If he's home he is mostly outside, meeting more of the neighbor kids and playing. He is my little outdoorsman.

Emily - wow. I'm not even sure what to say. Is been a loooooong week or two. Academically she's doing pretty good. There have been some issues but not because she's struggling, it's because she's not focused and not turning in her work on time. She is also struggling socially, and has done some things in the last week or two to make that issue even worse. We are unsure of how to handle everything that is happening. We will be meeting with Emily and her teacher so we can all come up with an idea of how to salvage this situation. She had a violin concert and choir concert this last week and did well with both of them. She is also spending lot of time outdoors and loving it.

Bob and I are exhausted. It's been a whole lot of stress and we like always are struggling to keep up. A lot of information has come at us and it's been hard for us to process it all and come up with the best plan of how to deal with it all. Bob slammed his finger in the car door and finally ended up at the er to have it drained. It's finally healing. We have been going to a new church for the last 6 weeks and we are really enjoying. It's a Unitarian universalist church and we feel very comfortable and welcomed there. The kids are loving it and so are we, so it's perfect.

I will get some pics up in the next few days. It looks like we will be going to Wichita at the end of this week for a few days. We need to get away from here for a few. A much needed break. Hopefully that will give me time to get caught up on pics.