Day 33 Fish Oil Study

We are actually really starting to say good bye to staff at RMH and the hospital....it seems unbelievable that we actually may be going to Florida on Tuesday.  We keep hearing things about snow on Tuesday....LOL  that is all we need, the big snow storm I wanted.....  Let's hope not!

Selah wore her new "nose or speaking valve on her trach today.  It was a big deal and Jon & I both came over to be with her.  Basically it covers the trach, Selah can breath in through it but then she has to push out her air through her mouth and nose.  We kept it on for 20 minutes to begin with and she did beautifully.  She had no issues and now we will start using it daily adding 5 min a day, doing it 2x a day.  Soon that will be the cover she uses...on her way to NO trach!  Using this will make her use her diaphragm, her throat muscles, tongue etc.... she hasn't really used them for almost 4 months so she has to be reminded how to do this.  We had hope for this new valve sooner but she just wasn't ready until she had been sick and had had to work harder at breathing.  Now she is handling it like a pro!   We could hear her making noises again but they were faint.  She calms down when she hears herself.  It's funny how being sick helped her so much!

She sat at the edge of the bed today with her therapist kneeling in front of her.  Selah held her trunk up for about 15 minutes on her own.  She only needed minimum assistance with her head.  When Ms Megan first started working with her, she needed 100% assistance, now she is needing only 25% or less:)  She is coming a long way!

 

She had the sonogram on the blood clot in her leg and they couldn't see one, so hopefully she is done with the 2x daily shots in her tummy.  We will find out for sure tomorrow, the sonogram was clear but there were some "changes" that I'm not sure what that means. 

Despite all the gains, there is so far to go....tonight I feel a bit discouraged.  At this point, comparing Selah to what everyone thought would be the outcome, is encouraging.  But comparing her to where she was & remember she was very delayed before the accident, is discouraging.  She is far from the child she was......  I'm thankful that I don't feel she is far away from me like I used to feel but if we were to go home right now, she would still need 24 hour nursing care.  My fear has been she will come out of the coma, but have so much residual damage from the accident that she won't progress any further.  I'm a realist and I am also hopeful but tonight I just feel discouraged.  Please don't feel the need to give me encouragement, for some reason, at times like this it just annoys the heck out of me!   Don't mean to offend, just keeping it real.   There is still so much ahead, so many unknowns....  I wish we could just snap our fingers and everything be perfect again but that's not how it works, 

We asked that her Valium dosage be lowered by one dose and it was today.  But her arms/hands have tended to "draw up" today!  We don't understand what is going on and it seems that just dropping one dose shouldn't be responsible for that but we don't know.   I've put her little animals that heat up on her arms and now her right arm is completely straight and her left looks normal.  Hopefully she was just a bit overwhelmed with all the things she did today and had done to her.  She had a natural (for her) way of holding her hands/arms and they did have a tendency to be drawn up some.  We have looked over all our pictures to compare her before the accident to how she holds herself now.

So this weekend we are packing and cleaning our room.  I had to buy a new set of luggage since I came with the bare minimum...that will teach me!  We are going to go and take pictures of a handicapped playground here and hopefully we can use that to plan one for the kids and also for an orphanage in Ukraine.   We were given tickets to a 18th century village that we plan on going to this weekend.  We think Selah will be flown out around 6 am on Tuesday and we are going to try and leave right after.  We want to get there as fast as we can but Sam & Sarah may have other ideas.  Between eyedrops and diaper changes we get slowed down quite a bit!

So the one thing I always always ask is to please pray for Selah.  Pray that she will recover completely.  Pray that if she doesn't God will give us the grace to be the very best parents for her for the rest of our lives.  The future is scary...parenting a child with special needs is wonderful but since Selah's accident, she is at a level of care that is beyond what we are used to.  There are days when that weighs on me, this is one of those days.


Here is a funny photo of Sam after getting his hair cut, he loves to get his hair cut and was quite happy as he waited on everyone else to be done.