Day 10....fish oil study....what a day....

Jon went over this morning and I got a call from him and the resident.  She felt that perhaps the rehab was not going to take Selah, that was a blow to my gut!   She wanted to know if we were comfortable going straight home with her still on the trach....ummm NO!  The logistics alone were overwhelming to think of.    We talked some more and she said she'd call the rehab and get back to us.

My heart just sank, we feel she has come so far but we realize she has a long way to go.  But to think that she would be denied going to a rehab at this point, just made my heart drop!  I really had to "cast my cares on Him"  This morning and early afternoon, were rough for me!!!!

  Well I decided to call the rehab  myself.  (anyone surprised at that??  LOL)  I spoke to the person reviewing our case and we were able to discuss Selah.  Thankfully  it looks like they will accept her as a patient.  The rehab has also spoke to the doctor. There just was lack of communication....    We will probably be transferred the week after Thanksgiving.  Selah will be flown down and we will drive down.  My sister in law Valerie will be there to meet her and to stay with her until we can get there.  All patients are accepted in for two weeks.  If she is making progress and meeting goals, then they will keep her longer.  If not we will go home because insurance will not let her stay.  The first two weeks will be intensive for Selah and for us.  We will be trained to take care of her in more practical ways.  Hopefully she will meet her weekly goals and be able to stay there.  Our number one goal for her is for her to come off the trach.  That will be the best place for it to happen at.  Certainly better than at home!

SO....please pray that everything will work out...LOTS of logistics to figure out....we have to find a place to stay in Jax....

But more than anything else....pray for Selah, pray that she begins to recover faster than expected.  I'm tired today, I'm discouraged....I really don't even have the words to say.....We've seen some progress and it is great, still no storms!  But she is far from the child she was on August 14th....  We have high hopes that the fish oil will work for her.  She is not near the "magic time" when it is supposed to really start working.  She will have blood work next week to see where the markers are at, when they are at a certain point, that is when the recovery seems to really happen and the earliest we can really expect is about one month. 

Today both therapists were out and Jon worked with her.  She sat up in her car seat for 1 1/2 hours and she was tracking with her eyes.   A doctor from St Mary's (the rehab here) did come by and see her and she did remark that she could tell she was tracking and responding.  Selah was also moving her left arm independently also.   So she is doing some things....I just want her to walk out of here.....I know that is not realistic BUT that is what I want!!!!!

Our real true Hope is in God and today as He has throughout this whole time, He was there to comfort me and to ground my thoughts so they wouldn't go in a million directions.   The future is scary and even harder than most families face in this kind of situation as we are so far from home and have the additional stress of that,  but I trust that God will work out things in a way that we don't even understand nor can try to figure out on our own.  He has proven Himself to be our provider over and over again and I know He will make a way for us.   We of all people should not wonder or try to work out things in our minds, as we have seen God do so much for us in the past.  I don't want to be like the children of Israel, seeing miracles, then turning around and doubting God the next day!

  But I feel very down tonight.  I know what most of the doctors expect in Selah's situation and it is not what we want.....they've never seen anyone recover to a normal degree from something like she has gone through and that weighs on me.  They would LOVE to see her recover completely and I think  they think there is some medical hope in the fish oil, to some degree but the reality is hard.  They want to prepare us for a life with a severely disable child.   Believe me if you really know me, I am about as realistic as they come, you won't find me "claiming something" but there is something inside of me that just says "NO" to the future they paint for Selah.  I'm trying to discern if it is just me or if God is giving me this thought.  Obviously no sane person wants to accept a future for their child that keeps her basically bed ridden!  However with Sam, we were very accepting of his disablity and just rearranged our lives around it.  Maybe that was because he was born with it and we never saw him any different than that.  We certainly accepted Sarah and Selah just like there were also.   I don't know but everything in me sees Selah back to "her normal"   So I don't know the future, one day I'll look back on these words and know whether God was speaking to me or if I was just holding on to a false hope.  But tonight I just want to curl up and escape everything......

Thank you for your prayers and support!