Christmas Eve thoughts

This Christmas will be one we will never forget.  Not only is it the first Christmas we've spent away from home, it is the first Christmas with our two girls.  Oh the plans I had for this Christmas....I wanted to make it so meaningful for our family....  I'm not a decorator, for the past 5 years we haven't had a Christmas tree because we were afraid Sam would pull it down on his head!  But this year I was going to get out all our ornaments and put them on the tree. I was going to put it up in our church where it would be safe from the three little ones and the three little ones would be safe from it!   We have some special ornaments, I buy them but never put them up LOL.  I'm one of those people, even when we put up the tree was so glad for it to come down and our house "get back to normal"  I don't like clutter or extra things out.  don't I sound like Scrooge?  But I do love Christmas, a simple Christmas. 

We don't try to out do ourselves each year but we do look forward to finding a few meaningful things ( things the kids really want and would use for more than 5 minutes)  for each child.  It's fun to that do that for them.  We work on trying to keep our kids from getting too materialistic..  This year a group from Bell Shoals Baptist that volunteer at the prison where my husband is chaplain blessed our family.  Back in November I got an email asking what the kids wanted for Christmas....we were just floored !!!  It was really hard for me to even think about what they wanted.  We took Shad through Toys R Us and wrote down some things he liked (he was by far the easiest!  By that I mean he can do a wish list hahahaha!)  Steve honestly was at a loss and the little ones are really hard to find things that they will actually play with/use.  But we managed to come up with a list. They came by Saturday night and dropped off the presents to us, wrapped Thank God!!!!.  I am so thankful for them.  Not only are our fiances tight but my mind is almost gone and the thought of doing real Christmas shopping makes me feel like having a panic attack.  We did find "something" at the Christian bookstore for Steve and Shad.  And I did do a Build A Bear for Sam (with voice activation) but that was the extent of it for us, that did me in!  If I had a million dollars to spend right now, I couldn't do it.  So I am so thankful for the sweet folks at Bell Shoals Baptist who blessed our family and who bless the inmates throughout the year with their presence and love.  Jon is thankful for the great group of volunteers who work tirelessly at ZCI to bring God's love to "his" inmates:)  There is no doubt in my mind that Jon has the best job for him in the world!  He loves being a chaplain and loves the men he serves!!!  And he is helped by all the 100 plus volunteers that come in and give additional service to the inmates. 

We were also blessed by a sweet young family here in this area with a gift card for the kids.  They have just suffered a loss in their family this past year and have tender hearts.  Thank you all too. 

So this is a different kind of Christmas for us....we have seen God's provision throughout this past year on a scale that we have never seen before.  Of course we have never needed it like we have this past year!  We've seen God's gift of His faithfulness on a scale we have never seen before....remembering our simple Christmas last year...waiting on our new children, hearts filled with anticipation....  Last year we had a Christmas Dinner and had our family and some of our closest friends over and we just had a good time together hanging out all day and laughing....  in my heart I was worried about our little ones in Ukraine and they were never far from my mind but we almost had all our paperwork done to bring them home by that point.  We got our USCIS (clearance form the US government- our last document) between Christmas and New Years (thanks to Mario Rubio's office!)

So tonight we are going to Mandarin United Methodist Church to their candle light Christmas Eve service.  Another church that has just blessed our family and wrapped their arms around us!  Then we'll come back to our "home away from home" and let the kids unwrap a present ( our tradition).  It may be different but when our kids are older, they will be reminded of God' love, faithfulness and provision to us during this time.  That is a real "life" lesson! 

I hope all of you have a wonderful Christmas this year and that you realize what Christmas is all about....  the Prince of Peace came into this world that night....He is still the Prince of Peace no matter what is going on in this world or in our own lives.....

ABCnews report from our church today

http://www.abcactionnews.com//dpp/news/region_pasco/zephyrhills/near-fatal-stroller-accident-left-one-child-fighting-for-life?fb_action_ids=10200144210117192&fb_action_types=og.recommends&fb_source=other_multiline&action_object_map=%7B%2210200144210117192%22%3A512368308803193%7D&action_type_map=%7B%2210200144210117192%22%3A%22og.recommends%22%7D&action_ref_map=[]

HEre's the link for the news today.  They came and taped our service.  Very Sweet. 
Our church is called Grace Church not Grace Connection but that's ok:)

Day 49 fish Oil Study~ better news

Selah did NOT storm today!  Two changes were made.  Yesterday she was taken off the new drug called Amantadine, AND the they opened a new bottle of fish oil.  So I don't know which helped but one did and today has been stable.  thank God!!

We went home yesterday.  I was really afriaid of my emotions going in and seeing Selah's crib and her princess car.  It did hurt but I was able to deal with it better than I thought.  Maybe because I was overwhelmed with all I have to do in order to get her home and to have our house ready.

We had a great service this morning and were glad to see our friends and family!  I had to fight my emotions a few times.  I can't help but remember the last time we were in service and I had two little girls with me. I do not like to cry in front of people and I "ugly cry"  so I was really not wanting to lose it!!   We left Zephryhills around 5 pm, it was hard to leave our family and some close friends and got back to Jax at 9 pm.  We drove up a back way through the Ocala National Forest and saw 2 deer and a wolf! 

I'm trying to figure out HOW I am going to get everything done in our home before Selah comes home.  The boys are giving up their room for her and we are moving all their things out to a cornor of the fellowship hall.  They will share the room with Sam & Sarah for now until we make a decision about what we are going to do.  Obviously we either have to add on or move.  since we live in a parsonage, it is not the smartest idea to put alot of money into remodeling it just for Selah because one day we will move and then we wouldn't be able to take it with us.  We haven't heard from Extreme Home Makeover yet...we keep hoping we will be contacted by them.  We live in a pretty small house if you add a full time nurse to the mix!  I'm a public person in some ways (I guess that is obvious since I blog) but I'm also very private when it comes to my real emotions and my family. 
We will make this work for Selah but it's going to be uncomfortable for all of us.

We are going to have to go home before this weekend in order to do alot of this and do a deep cleaning ( carpets/curtains etc) things I have to have done before she comes home (because I know it won't get done once she is home! Our other van wouldn't crank today nor would the ignition switch turn, so that has to be taken care of too.  I have a list of things to do...  a list helps me  but I am overwhelmed feeling right now!!! 

Please keep praying for Selah!  Pray that she begins responding like she used and progresses again!!!!

Day 48 Fish OIl study

We are home.  Trying to put away 4 months of stuff....feeling overwhelmed.

Selah had storms all day.  Jon stayed till about noon, then he came back so we could get started on our trip, it's about a 4 hour drive.  We are just heartsick and worried tonight.  We brought a child to Florida who was recovering and full of promise.  Yes she had a long way to go, but she had only gone forward even when she had pneumonia.  Now in less than 2 weeks our child is back to where she was over 2 months ago!  I'm mad and worried.  In my heart I feel it's something to do with the fish oil.  She does not smell fishy at all.  To me that makes me think the fish oil was compromised. All we know is the hospital in NY treated it like it was gold.  Here I've seen it out and on the nurse's cart as rounds were made....  Of course I checked with the doctor's assistant who does the study and he said the fish oil should tolerate that but I can not get away from the fact she does not smell brimy anymore and she is storming....  to me it goes together...

The nurse felt like her first storm this morning was a direct result of the new med she started so those meds have been discontinued.  But she has had issues all day....even if she wasn't storming, her heart rate was much higher than normal and they gave her extra meds. 

PLEASE pray for Selah!!!!!!  We are so scared for her.  Something is terribly wrong and I do NOT believe it is just Selah being "unstable"  she was stable for far too long!!

We are here trying to figure out how to put stuff away and organize the house for Selah.  Jon is going to do the service at the prison and the church tomorrow then we are going back.  I will have to come home and stay for a couple of days to get ready for Selah to come home on Jan 2.  I feel like i have so much to do...

Please please pray for Selah tonight and tomorrow at your church service!  We need help and wisdom.  We don't think we can get things together until Jan 2 to get her home and we'd rather her be stable before we tried to get her home.  I do not know what we are going to do!!!

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!!!!