Day 46 Fish Oil study~ another rough day

Oh my gosh, today made yesterday look like a picnic.....

It started out pretty good.  Jon went this morning and he put on Selah's hand splint and she pulled her hand away and up towards her shoulder!  She did ok in therapy. We met with the doctor and the team and the meeting was very good.  She will be staying until Jan 2.  They are trying to get us 24 hour nursing care, as well as all other kinds of help.  Our doctor seemed to take serious how much regression Selah has had.  Now she is feeling better but still is not doing as much as she did in NY.  The doctor has ordered a MRI if one can be arranged, to see if there is any change in her brain.  Selah's meds had been changed, a new one added that is supposed to help her wake up and it doesn't seem to be doing much.  The doctor had dropped down her BP med ( it can make her sleepy/sedated) and her Valium had been lowered.  We are all for lowering medicine!

So we go back in the room and the nurse was giving Selah a shower, she was so clean and sweet smelling.  But then Selah began storming....and she made up for the past 45 days.....she stormed for at least 3 hours...  it was horrible,  I got in bed with her and held her to rock her side to side, which calms her down.  I could feel the waves as her body would tighten and then loosen.  It was like a woman having contractions.  I could tell when it was coming before her heart rate would go up.  Nothing seemed to help.  they gave her 4 pm meds early and that helped for  a few minutes but then a wave would come.  Then they gave her a bigger dose of Valium and finally she stayed in the 100-125 heart beat a minutes range, which is still high but better than 180-190! 

We do not know what to think....  my first idea is that the Fish Oil was compromised and not kept cold enough. I've noticed the last few days that I don't smell the fish oil smell on her!  That seems odd to me!   I hope with all my heart it is that! If that is the answer, we should knwo pretty quickly as we are going to use a new bottle tomorrow!!!  and when she started the fish oil, she had no more storms after the very first dose.

The second idea is the med changes but the med changes made were not big steps at all and she should have been able to tolerate them.   She had tolerated her Valium being lowered the last week we were in NY with no issue.

Third idea is that something happened to her brain on the air plane flight...so was so different as soon as she got here and we really can not blame it on sickness at this point.  A MRI has been ordered

Fourth idea is that she is more cognitive and she has shut down due to her institutional autism.  This is not consistent with her not having a reaction when her eyes are threaten ( she should blink when the fingers come towards her eyes and she doesn't always do that-she rarely does it)  If she shut down,  that would mean she has more cognitive abilities than we see in other areas.

Jon and I did discuss this tonight and we look at this situation and try to put Sam into her place.  Sam would freak out with the changes, new people, going from gym to rooms, to offices if he had any awareness whatsoever.....  so that probably has to play into this some but who knows....????

We are perplexed and heartsick....

Please pray... we do not know what to think, things are so different and we are worried.  In a week and two days we have gone from hope for her future to despair.  It makes no sense to us.  I'm glad the staff here is listening to us but I know it is hard for them to imagine her being any different than she is now.  This is not normal!  She has lost so much!  I am not blaming it on the hospital here, there is something going on with Selah, she is not even responding to us like she did before.  It's like we see glimpses of her, as she was, before the move but she is not as involved with us as before. 

I came back to eat with everyone and was going to spend the night with Selah but her nurse said she is sleeping and everything is calm and normal right now.  So I'm going to go to bed soon and just hope tomorrow will be better. 

Please Please pray that we find an answer to help her!!  Pray that she will be able to get back to the point she was and no more storming!!!

Day 45 Fish Oil study~what a day!!!

Today Jon and I split our time so I could stay here and do laundry and repack some things since we are going home on Saturday.  He took the morning shift.  Selah was agitated and unhappy during therapy.  He came home for lunch and stayed with the little kids while I took the boys to see "The Hobbit" finally.  I dropped them off and they got the last pair of Hobbit 3D glasses, they were so happy

 

I went to spend the afternoon with Selah and went to all her afternoon therapies.  She got through the first 2 ok and then by number three she had had it!  She stiffen and her heart rate went up to the 130s.  I saw her arm/hand starting to shake and I was freaking out on the inside because that looked like the beginning of storming!  The therapist carried her back to her room and laid her down and her heart rate slowed down within 5 minutes.  Then she put a "weighted blanket" on her....oh my Lord....  Selah freaked out!  Within a couple of minutes her heart rate was up to 180, She started shaking all over and her arms started to come up.  She was also breathing weird, like a whistling noise.  I ran for the nurse at the same time her alarm started sounding and everyone came running.  By then her heart rate was in the 200's.  I had already taken the blanket off.  One nurse went for the airway (although her oxygen was at 100% she did NOT sound good)  They called for the respiratory team.  I told the charge nurse I thought she was storming and asked frantically for her meds!  The nurse went to get the meds and by the time she got back, Selah had her heart rate down to the 170s and lower....within 15 minutes it was all over....then my legs started shaking!!!  So I asked them not to give her meds and they didn't. 

 

The consensus is that it was not a storm.  It was an "event" that involved some sticky gunk in her throat as well as her being upset from therapy and the blanket.  It looked like a "storm" but she did not sweat, she brought herself down to normal so quick and her blood pressure was normal when they took it.  So it could not have been a storming issue, thank God, after 45 days it would be a shame for that to have happened 

 

 

Her one med that helps control her BP and the storming was lower today and the new drug that is supposed to wake her up was raised yesterday.  Perhaps this is Selah becoming more aware?   It scared the crap out of me!  We'll discuss her meds tomorrow.  We are leaning towards giving her a little more time to see if she can adjust before putting her back to her original dose.  We know that she will be here until January now as they work on her meds.

 

This episode scared me today...all I could think is what if we were home and that happened and I was alone with her and the other two little ones???  After it happened, I called the home nursing agency to see if I could find out how many nursing hours she will get.  I didn't talk to our worker today but he will be in tomorrow.  Please pray that we will get 24 hour nursing.  I can not imagine the  responsibility that lies ahead.  I've dealt with alot before but this is way out of my league!  I remember when Sam was coming home from the NICU on 3 machines I was very confident and stupid, all I wanted to do was to get him home!  Stupid me!  At that point, with the insurance we had we couldn't get nursing at home and I naively said that I didn't care.....  Since then I have said I would not live that first year over for $1 million dollars....Now it looks like I'm going to have to relive that year and then some....     I will be honest I am scared to bring her home.  I'm not afraid of Selah but I'm afraid of her dying!  I pray that we get 24 hour nursing!  I know what we went through with Sam and he had less issues than Selah does.  Dear God it scares me to death!  Being a parent is a huge responsibility, being a parent to a child with such special needs is overwhelming responsibility and when you add in there 4 other children, 2 who are severely handicapped and a husband that works two jobs....  I truly do not know how we are going to do it.  We want her home with us and feel that is the best for her overall and it is best for us, but it is scary.  She was fine for the rest of the day and so far tonight.

 

So we don't know if today was good or bad....is she waking up more and this is part of the agitation that would naturally come with that?  But if she were waking up more it would seem she would at least be doing the things she was doing in NY and be more involved in her therapy.... The thought has been raised maybe, just maybe, she is not cooperating because she is unhappy dealing with new staff and a new place.  That would almost suggest more cognitive skill than we could imagine at this point but who knows.  She certainly isn't sleepy or unaware of what is going on.  Having institutional autism has to play in also.... We don't know what to think and try not to analyze it too much, only time will tell....

 

When I am down, I have to remember she has come so much further than anyone ever expected...she is aware of us, reacts to things she doesn't like in an obvious manner and is not "just a body on a bed"  I am thankful for that!!!

 

Please pray, she has regressed in many areas, no one knows why and now this...we are heartsick but we also realize that there are so many unknowns with her that this could be something going on good (as far as her being more aware)  I just do not know.  But I can tell you we are sad and worried.  Please pray!!!! 

 

 

Clip of the tv interview

http://www.actionnewsjax.com/mediacenter/local.aspx?videoId=3874012&navCatId=20896

Here is the link from our interview last night.  Lots of good video of the whole family.  Sarah is in rare form:)  And Sam is making funny faces....

Zone Health~ Fish Oil

http://www.zonehealth.com/theclantonfamily

If you are interested in buying the fish oil we use on our children, here is the web site.  Jon & I also use it.  There are many other products that you might be interested in if you are interested in improving your health and losing weight.  Dr Barry Sears is a researcher and a leader in this field.  He is well known and respected!   He is a well known writer also. I've read his books and they make so much common sense about how inflammation attacks the body in many ways.  There is so much research on inflammation ( which can cause all kinds of diseases from heart disease, to cancer, diabetes etc)   After reading about this, it made me want to take care of myself more.  I'm not one who gets too into things and I'm certainly not a health nut!  But this made sense to me and saw how inflammation can hurt my body.  I need to be as healthy as possible!

I hope to be able to have this on the side of my blog before long but have had some difficulties in putting it on.   Our family will get 10% of each order that is made off our link.  So if you are interested and I have had so many people ask me about this.....  please feel free to check this out!

Day 44 Fish Oil study

Selah had an ok day.  She still seems sick and "off"  One good thing is there has been more communication between NY and here and I think it has made the staff question why she is so "off" from  where she used to be.  They also are taking into consideration the fact that she has institutional autism.  Today when we met with the cognitive therapist, Selah responded to a loud noise by turning her eyes and head away from it.  Based on who Selah was before the accident, that was a "normal" reaction for her.

One good thing is that she is showing emotions, those emotions are not happy ones but she is quite able to show emotions.   I was reminded tonight that she was never expected to show any emotions, so even if it is negative, it is emotion!!

Selah was measured for a wheelchair.  Of course we hate that!  It is one thing to put her and the little ones in a stroller but a wheelchair....  We had gotten one for Sam and I hated it.  It was bright blue and we used it probably 2 times except for our trip to Ukraine, and it got "left behind" at the orphanage! I hated Sam's chair so much because it was bright blue and just screamed "look at this kid"!   We chose one that looks more like a stroller and it had pink on it.  It's a smaller one but I don't know how I'll get it and a double stroller in the back of our van.

 Please pray that Selah will get back on track and show this hospital what she can do and even more. We want to see her progress, not regress like she is doing.  This is hard for us and her too. 

Today is 5 days since we started Sarah on Fish Oil.  Dr Barry Sears was so generous to send us fish oil for the little kids and for us also.  So today when we walked in the apartment, she crawled/hopped down the hall to me and lifted her arms up for me to pick her up!  She did it as soon as I cane in tonight also!  She has never done anything quite like that before!!!  We were all amazed:)  I'm excited to see how this will affect her.  She is such a happy girl, I think this is going to help her understand more, and to enjoy her life more!

our hotel, it has pine trees all around, so nice and quiet

 

TV interview

Just to give you a head's up, we were interviewed tonight.  It will be shown on FOX Ch 10 at 10 pm and CBS Ch 6 at 11 pm here in Jax.  The interviewer told us that Rochester was requesting it also so it maybe shown there too.

It amazes me that people are so interested in our story.  I don't understand it but I do appreciate the opportunity to share how God has been with us throughout this whole ordeal.  We found out about the fish oil study through someone else's story and who knows how our story might help or encourage someone else. 

Day 43 Fish Oil Study

Selah had a little better day today.  She still is not herself.  I think the staff here is finally believing us when we tell them of the things she did in NY.  I've encouraged them several times to contact our therapists and get more info from them and they did talk to our wonderful speech pathologist Meredith who was able to reassure them that we weren't nuts or exaggerating what Selah was doing.  We discussed with staff why Selah may have regressed and obviously being sick again is probably the reason but we're almost wondering if she is aware that these are strangers and she is purposefully not cooperating. 

She did do some new things today..

she responded to pain just with one arm moving away (good sign)

when they stimulated a fall she responded on both sides not just the right side

she seemed to look at herself in the mirror

she finally got on a swing and relaxed while her OT held her.

she closed her eyes to a stimulated threat to her eyes. ( only 1 out of 4 times but that is better than what she was doing)

 

So these things are better than she has ever done here but still is far from what she was doing in NY.  Please pray for her that she will be able to respond better.  Her new med will be going up tomorrow and the doctor will be taking away some of the high blood pressure med that she has been taking on Thursday.  We're excited about that because it can make her a bit out of things.  It was necessary when she was storming but now hopefully she can manage with the dose going down.   

 

We want to thank Deerwood Publix!  They donated our supper tonight!  2 Mojo chickens with baked beans and potato salad, bread and apples!!  Woohoo!!! I LOVE Publix...."where shopping is a pleasure"! (And thanks to our friends at Mandarin UM who asked them about donating some meals! so the next 2 Monday nights are covered)  How nice not to have to think about supper....and NO pasta (LOL- my RMH friends will understand!)

 

And BIG news....Good Lord willing and the creek don't rise...(old southern saying...)  Jon will be preaching at Grace Church and at the prison this weekend!  We plan on going home Saturday evening and coming back here on Sunday after church!  Please feel free to join us at 11 am at 7060 Berry Rd, Zephyrhills Fl 33540  I'm dreading going home and seeing all of Selah's things, I know that is going to break my heart!

 

 

This picture is from today.  She loves her daddy, you should see the picture I took with her, she turned her eyes and head as far as she could away from me!  I had been working on moving her knees and she was ticked off but she loves daddy!!! I had a gift card from Target and went and bought her some new clothes, she has gained so much weight!  I actually bought her size 6!  Just think 7 months ago, she was wearing a size 2 or 3:)  Sarah has gained 13 pounds and is wearing a size 5:)  She was so tiny, a size 2 had to be pinned up on her!