Day 47 fish Oil study

We tried something new today.  We had the therapists come to Selah's room instead of her going to the gym or their offices.  She did much better.  She responded and turned her head with the speech therapist when she touched her face and when she called her name.  That is something she has not done here.  Then with the cognitive therapist, in 4 out of 4 tests, she responded to the eye test (where her eyes are threatened and she blinks)  that is a first also.  Around 2:30pm a staff member came an invited us to go to the gym for some Christmas music.  I thought she might like to go and sit and listen....boy was I wrong....

First her oxygen levels went down ( we think that at least was a mistake and the machine was hooked incorrectly)  I took her back to the room and she started storming...her "witching hour" is 3 pm now 3 days in a row.    She only stormed for 15 minutes and then was back in a more normal range but a bit high.  the nurse gave her the 4 pm meds and added an extra dose that I probably wouldn't have wanted to give her but boy did she relax, so honestly I was glad she got it. 

I finished picking out her wheelchair today....then when we were out tonight doing a little Christmas shopping I got a call about ordering her hospital bed and some other things.  That call really got me down.  Talk about reality slapping us in the face.  I'm not some "name it/claim it" type person or someone who is not realistic but honestly I really did expect her to improve and not need a hospital bed or a wheelchair.  I guess when she started making so many strides I thought by the time we got home, she would be close to back to "her normal"  But that is not going to happen.  I can't even explain how sick I felt when I got that call.....

Today was Sarah's 6th birthday.  How ironic that we spent most of today with Selah in the hospital.  On Selah's birthday we spent the day with Sam and Sarah in the hospital having eye exams under anesthesia.  We did take her out to eat but she wasn't too thrilled with the stew LOL

I'm just heartsick.  There is still alot of discussion going on between the doctors/staff here, in NY and our Fish Oil Study doctor.  Some tests have been ordered to check for various things.  I have so many theories going on in my head of why she is having so many problems but I don't know for sure.  Please pray for Selah and for us.  This awful setback is so hard for us because we have had only progression for weeks and weeks.  That old sick feeling is back in the pit of my stomach.  This is harder to deal with since we had seen such change.  We used to couldn't wait to get to the hospital every day to see what new thing she was going to do....

I used to pray to get Selah back now I'm just praying to get the Selah of a month ago back!!!  I still have some hope that this will resolve, it makes absolutely no sense and I feel it is somehow tied in with her fish oil.  I thought they had changed bottles but they haven't  I think the doctor wants to get complete clarification of how the fish oil was handed in NY.  Maybe this bottle got contaminated....and the fish oil isn't potent anymore. 

One mom who uses fish oil on her daughter who has brain damage, stopped it for a few days and her daughter regressed immediately.  That is what makes me think something is off with the fish oil bottle.....  I really believe the fish oil gave her the progression she had for those 6 weeks.  There was no other answer for all she did since she improved rapidly when she started the FO!

My thoughts are all jumbled and I'm a mess tonight. 

I know five moms that I'm friends with on FB who have lost their children unexpectedly in the past three months!  Four of them did have special needs but their deaths were totally not expected.  I also know two moms at the Rochester RMH who lost their children!  One child passed away and he wasn't the "sick" child... I know another family that their child is nearing the end of his 5 yr battle with cancer...pray for Vinny.  I think of the Connecticut families  So much sadness, and heartache this time of year.  It's very hard for me to feel very festive this year.  But I am thankful for the real meaning of Christmas, our Savior who came to a dark world to give hope and light.  I'd be lost, in many ways without Him!

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.