Day 11 Fish Oil study

Today made a full week that Selah has had a full dose of fish oil.  She still has not had a "storm"  We were talking with her therapist about the "storms" and she said when she first working with Selah and she had started storming, she thought it would only get worse.  After she got on meds for them, we were told that at some point she probably wouldn't respond to meds forever.  We were told to expect the storms to get worse...thank God that hasn't happened.  In fact even before the fish oil, she was going about 1 to 2 days between storms but since the fish oil study started there have been no storms.  One morning the night nurse told the morning nurse that she had stormed overnight ....we tracked that nurse  down and found out that her heart rate had gone up when she had her teeth brushed....and then went down...that is not a storm!!!!!  So thankfully we are still storm free
 
One thing we are worried about is her left thumb seems to be drawing up into her hand.  Also her right arm might be drawing up a little at the elbow.  Everyone that has had a brain injury has some kind of physical response.  Selah has done very differently than most people who have be in a near drowning.  Instead of drawing up, she has extended her limbs.  It is very unusual for that to happen.  But now we see these two things that bother us.  We are watching her very carefully.  It might not mean anything because her limbs are not tight but they just seem to go back into these certain  positions. 

She has the first step down trach in and is doing good.  But she is not doing good when they try to close the airway and make her use her mouth and nose.  She begins to struggle to draw in breath.  She also is not coughing enough and still has to be suctioned out.  She really has to start coughing.  Please pray for that!!  We are disappointed!

We had a team meeting today, mostly talking about the transfer to the rehab in Jacksonville.  Obviously we have some real concerns.  Let me see if I can explain it good to you.  Six weeks ago we were turned down for rehab here.  That was heartbreaking.  The same doctor came in yesterday  and did say that Selah had progressed some but they would probably just offer us a 2 week program where they would work with us as parents to be ready to transition home.  They are not a pediatric rehab all though they do have kids there, but it's not their speciality. 

After talking to the nurse yesterday from Brooks, I felt like they would and could offer Selah more than that BUT it is really up to the insurance company and Selah.  The way rehab works now is there are weekly goals, if the child meets them and is progressing, they can stay, if not they are sent home.  So Selah has to meet goals.  I talked to them about Selah and WHO she was before the accident....very developmentally delayed, from an institution and never had heard English until we met her back in April.  We hope that will be taken into consideration.  The therapists we have now are awesome and have understood where Selah was BEFORE the accident and do not approach her in the same way they would a normal "eight yr old"

After the meeting today, Jon and I both broke down.  We know what lies ahead.  We have been the parents of a child with disabilities for almost nine years.  We have fought many battles for his health care and his therapy....you have no idea....  We brought Sam home with THREE machines and could get no help.....we know what Florida offers and it is not much! 

We have goals for Selah, the main one is getting her off the trach.  If that doesn't happen in the hospital or in rehab, then it will be difficult to find someone to work with her once we get home.  The therapist we were set to work with is not comfortable with working with her trach....it takes a specialist. 

We are concerned we will get Selah to Jacksonville and she'll be there for 2 weeks and then sent home.  We ask that you pray that she will get the therapy she needs to rehabilitate her muscles and that all her special circumstances be taken in context.  To be honest, since she was so delayed before we are afraid she will be discriminated against in rehab.  It happens.....the idea is why put all the effort into a child that is not "normal" already.  I can assure you it happens, it has happened to Sam...

Selah has not really done any new things, she has not regressed either but we like new things!!  She did take some soup in a syringe today and did really good on swallowing it.  She held her head up while I was changing her clothes and did quite well.  That is new this week, holding her head up for up to 45 seconds.  She was showing some head control last week but it is more this week.

Everything has been baby steps, even when I say something like she held her head up , it's not like she can maintain for more than a minute.   We have a long way to go.....

We are discouraged to be honest, lots of reality coming down on our shoulders.  We are not quitters, we may be plodders but we don't quit:)   But we are sad and worried about several things.

We are still looking for accommodations in Jax.  I have several friends looking into things but no one has an answer yet.  If you have any contacts please contact them for us. 

Thank you for your prayers....don't need any christian advice tonight...just prayers....  we don't know the outcome of things, we are hopeful but please don't say she will be healed or anything like that because you don't know and that does not comfort me for the most part.  We may have a long long lonely road ahead and I really don't need platitudes....  Not trying to be mean...but it just gets on my last nerve and I don't have too many left :)  (actually I've never had very many lol)

I finally finished reading a great book today someone had sent me about extraordinary women of God.  They all faced incredible challenges, more more like what the New Testament saints faced than what the Christan church world of today thinks a good christian will face.  It encouraged me to read of the various trials they went through and how they felt.  One woman a Korean lady stood under great persecution by the Japanese before and during World War 2 and yet she stood for God, even when she was afraid.  Her frank works encouraged me today.  She literally had a "Shadrach Meshach and Abendgo" moment when she was told to bow down and worship the Japanese king and their idol in front of others.  She refused and then withstood torture for the next 10 years!  She shares how she had faith at times and then shook with fear at other times....I can relate although I am not going through something like that.  But there are times when my heart is heavy and times when I have more hope......  there was also a chapter in there on Gladys Alyward, one of my favorite missionaries....  I loved this book because it told women's stories of faith warts and all!!!!  I believe in that!!!   Warts and All!!!

So we are resting in God's peace tonight but we are discouraged and tired.....