Speechless..... Day 201 Fish Oil Study

Speechless...rarely am I....BUT...something is going on with Selah!

This sounds so dumb but it is hard for me to describe, hard for our nurses too....she is improving.  Just in the past week and a half there has been such a big big change in her. 

Her tone (how tight or loose she is) is almost normal everywhere but her legs/knees and the PT says she gets 90% range of motion there when she is working with her.  Her ankles and feet are great.  When she was sick and in/out of the hospital in April, her wrists were curling up.  We even had them come in and measure her for splints...now that is gone!  Her PT says she doesn't need them!

 

she is sitting straight up with no head support and look at her hands!  She does have a head rest behind her head but she is straight and doing all the work. 

We finally changed her formula from Pedisure to Complete which is a lower calorie and a plant based formula  (it's first ingredient is peas....and I can read all the ingredients unlike Pedisure)  It took awhile because insurance had to approve the change.  She started it last week.  Her poop is more normal, she doesn't seem to be have all the gas and tummy cramps she had before that would shoot her heart rate up.  She is a chubby girl, but she doesn't look as chubby now, not that she has lost weight, but I think the pedisure was making her belly extended from gas.  So she feels better physically. 

Her heart rates are wonderful...under 100, mostly in the 60's and 70's!  That is a miracle.  We'd had a few times when her heart rates would be normal, but maybe for a few hours or a day...It's been more than a week now!  I can  remember days when she'd be at 160 all day...OMG!  

Yes she is still on Fish Oil.  This is day 201 on Fish Oil.  We didn't give it a couple of days when she was throwing up but for the most part she has gotten it 2x a day for 201 days now!  We still can smell fish oil LOL  She is our little mermaid:)

We finally got the order from the doctor for her to wear the "passy muir valve" while she is awake.  This cover on her trach allows for her to breath in her trach but forces the air up out of her mouth/nose to exhale.  She handles it great with no issues.  This moves air over her vocal cords and at some point she will probably start making noise again.  Remember in NY, they worked with her on it and she made some groaning noises.  They were light but there!  So now we are waiting for her to make some more noise!  Once she starts making it, she will continue.  At night she has to wear the regular valve right now and she can make a slight noise with it on and she makes that noise if she is wet.  She gets her feeds all night long, so she tends to get wet at night more often and she does NOT like it.  Her night nurses agree that she makes the noise when she is wet.  At first Jon and I thought there was no way she was communicating BUT she is!!!!   She was still in diapers when the accident happened and we were planning on working with her on that....

We are waiting for the insurance to ok her for speech therapy and then it is full steam ahead in working her off the trach altogether!  She is swallowing all the time now, just like you or I do.  She rarely drools, only when she is sleeping and that can happen to anyone LOL  she also keeps her tongue in her mouth!   That is a biggie!!!!

Once she is off the trach, we are starting HBOT Oxygen Therapy!

There are so many slight things that only we or our nurses would notice but she is looking at us more (she had a problem looking at people before, institutional autism)  she is relaxed, not jumpy, NO Valium for almost 2 weeks now!  Clondine (a BP med) used rarely ( most of the time she is too normal to meet any of the parameters)  More movement alof of it seems purposeful...   If she is placed on her side and doesn't want to be there, she tries her best to roll her self over.  She hasn't done it YET but it is coming!!!!

My heart is so thankful, we have no explanation for this huge improvement over the last week and a half (not even 2 weeks yet) but it is unreal.  We all just say THANK GOD!  Whether it is from her body/mind healing (since God made our bodies to repair itself) whether it is from the fish oil (that God made the fish) whether it is just prayer....  I do not know.  BUT I know how things have been these last 9 months, and there is a REAL change going on right now.  And however it has come....I thank GOD for it!

I'm pretty honest on here, I try not to make things better or worse than they are..."just the facts".  I've been sent different blogs/facebook pages of kids in situations like Selah, and knowing what I know, I can read between the lines.  The families alot of times try to make things more positive because they want to have hope, it is horrible not to have hope.  But it's even harder to have a false hope.   I've kept it real on here so if you see I share improvement, it is real and it is verified by her nurses and therapists.  There have been days, weeks, months of no real improvement, little things that maybe were not consistent....but this is consistent and continuous! 

When I look at Selah, I'm seeing "SELAH" now at times....there have been small periods when I could see her in her eyes (if that makes any sense) but I see her more and more now.  The way she looks at things, the way she looks at me and makes eye contact then looks away is just like she did BEFORE the accident and she is doing it more and more every single day.  

Again I don't know what to say...and we still have such a very long way to go but this is good!!!  I wanted to share all of it in detail with you all.  Thank you for every prayer that you have uttered on her behalf.  Please keep praying for our little girl.  If she'd been at this point, say a month after the accident, we'd have alot of medical hope that she'd fully recover, since we are 9 months from the accident, there still is little medical hope for Selah that she will go much further but God.....