Day 6 Fish OIl Study

Today we took the kids over to see Selah. 

 

I wish I had alot of stuff to tell you tonight but she is the same, no new things happening.  She still hasn't really stormed at all since the fish oil study started and we are thankful of that.  She did so many new things on Thursday and Thursday night that I think she is having to process it in her mind.  She was quieter yesterday and today.  She hasn't regressed any except she seemed tighter in her arms today but I think she was stressed having so many people in the room and being up in her chair for so long (about 1 hour up in chair and 1/2 hour in my lap)    Her heart rate never went over 125 and then only for 30 seconds or less.  One thing that was new she had her "crying face" on when we were leaving.  I don't really think she understood we were leaving but maybe she did, although I think she was about ready for us to go! 

 

Update:  just called the nurse and she is more relaxed and the tightness in her arms are looser and more back to her "normal"  I think she had too much sibling love today!

 

If you have read the articles I posted about the fish oil study you might somewhat understand how it is supposed to work.  The Fish Oil brings down inflammation and allows the brain to regenerate.  Plus fish oil has the building blocks of brain development DHA in it.  There is alot more than that but that is in its' simplest form. 

 

To get ready for the Fish Oil study Selah had blood work to determine the level of inflammation in her body and the level of a few different acids.  She also had a MRI.

 

With the other patients, changes occurred when the level of inflammation went down to a certain level and the "something" (can't remember what it is) went up.....that usually happens about the one month mark.  BUT we have seen some things already and the BIGGIE is NO storming!!!!!!!    That is HUGE!!!!!   So I have to remember that on nights like this when I feel discouraged.   I just do NOT think it is a coincidence that she had a bad storm Monday morning and thens started the fish oil at 6 pm Monday night and hasn't had one since then!  That is huge!!!

 

But I will be honest, I feel discouraged tonight.  This has been a crazy year for us altogether and the past 13 weeks (we left home 13 weeks today to come up here) is catching up with me.  In several ways we are NOT in a hurry to leave here because of the excellent medical care Selah has gotten but  it would be so nice to know when we were leaving.  Even if we weren't going to leave until January, if we just knew for sure it would be so much easier to plan things.  It's hard to make decisions about things like school ( do we order more books or do we hold off???)  or anything even the holidays.  Do we plan on being here, which is fine, or will we be home or will we be in Jax at the rehab?   I just want to know!!!!!   When we left for Ukraine in March, we left on a ONE WAY ticket!  That was a bit unnerving but we had no choice, it's a weird feeling to not have a return date....and here we are once again on a ONE WAY ticket.....we truly feel like sojourns:)    I think if we had our way completely we would rather stay here until she could come off the trach and then just take her straight home.  I don't know that is going to happen but....that is what we would like to have happen.  And we truly want to see a good snow storm!!!!!  I will be so mad if after all this time we leave and there has been no real snow!!!!!!

 

 

So please pray for Selah, pray that this fish oil study works for her like it has for the other six people.  Pray that she recovers and that we see some more results soon.  Pray that she can handle the new trach on Monday and she can easily make the transition from breathing out of the tube in her throat to breathing from her mouth and nose again.  You have NO idea how much easier it would be for her to be off the trach!  You have NO idea how much I hate the trach.  I have met my Achilles Heel!  I can not deal with it without having black dots in front of my eyes!  I feel breathless even talking in depth about it.  That is somewhat embarrassing to me, after having survived many medical things with Sam but I kid you not I can not do the trach!  So is she is off it, it makes life easier for her and us! 

 

I haven't said this for awhile....but I want my sweet little life back.....I want my baby girl back and our simple life, living in a small parsonage, working in the garden, taking the big boys to school, and the little ones to therapy.....couponing,  cooking for my family, eating dinner together, JUST US! not another 20 families.....MY OWN BED!!!!  I want to be able to tuck everyone into their beds at night and go to sleep under one roof.   I want to see our friends and family.  I want the sweet life I had for 3 months with my 3 boys and 2 new little girls back.....that is all I want....it was the best three months of my entire life and I want it back! 

 

I don't mean to sound ungrateful or unappreciative about anything, we have made things work for our family since this has happened.  We've stayed together and no matter what, after the first few days, we eat together as a family every evening.  We've made new traditions for our family since we've been here and have stayed close & involved.  But I want to just get our little girl, pack the car and go home together and everything be back to normal.....

 

I'm not stupid, I know even if the fish oil works perfectly she is going to have to have lots of therapy because her muscles have atrophied since being in bed for 3 months.  There is a long road ahead regardless....

  So please continue to pray that God will touch her and allow this fish oil to work in an unbelievable way....Pray that it works for her and that many others will hear about this and that this will change the protocol for drowning accidents.  There is nothing that is done for drowning patients except maintain the body.  There is no drug to give nor surgery to do...nothing....if this works for Selah, it could be a huge thing for drowning patients world wide!