Day 24 Fish OIl study

Today was Jon's day with Selah.  She loved her new Sesame street DVDs and paid attention to them during her rest times between Physical therapy, Speech Therapy and Music Therapy.  She was busy today and still a bit under the weather.  She seems to have fevers first thing in the mornings.  She isn't kept on Advil or Tylenol so we can see if she has a fever and not just over medicate her.  It's hard for me when I don't go over to see her but she loves her daddy and I don't think she misses me:)  She did fine during therapy but nothing new.  We feel that she is understanding more than she can show at this point and when you factor in not feeling good you just want to rest.   So please pray that she will get better and that her brain will continue to repair itself.  Thank God she has had no storms now for the whole 24 days!  That is such a blessing to her and to us because it was almost more than we could stand to watch her body like that!!!!  It's hard to stay positive when we don't see any new changes.  There is a part of me that is afraid that she will "come out of the coma" but will never progress beyond where she is.....when I get afraid, I have to remind myself of that woman in the mall....she told me that there was something big ahead for our family, and NOT to be afraid, and many will see.....(this was back in May ~for my newer readers)  I keep telling myself that when I find myself paralyzed by fear of the future.  I truly thank God for that woman and for that word!  It has carried me through some dark times. 

I want to thank you all for giving to the heating system at the mental institution the girls were at in Ukraine. Thanks to everyone who gave, and the anonymous matching grant, the need has been met! Thank God we loved all the children and adults who were there and were very worried about the heating system. The building is a post World War 2 building and it needs repairs but thankfully no one will freeze this winter! I have so many dreams for that place....so much we'd love to do one day! Actually my dream involves us living and working there....God knows what lies ahead but when I find it hard to sleep at night, I lie awake and think of all the things I'd love to do there and in the neighborhood surrounding the institution. One day we had to circle around a different way leaving the orphanage  and we passed a brand new Jehovah Witness building. It looked like an American built one. We were told that is the only "church" in the area.... how sad!

Here are some pictures from near the institution we took them on "gotcha day" as we were waiting at the bank.

 

People getting water from a water truck.  The town of Torez itself only has water an hour or two a day.  The area around the orphanage is way outside of town.  It is much harder for the residents to get water.  I heard that no one had water for several days just recently

 

These pictures are of us at the outside market.  that is the only store in that area. 

 

So pray for that area of Torez Ukraine.  It has my heart....I told Jon I could have my orphanage and he could have his church:)   It would be perfect....but God would have to work some really big miracles for that to ever happen!!!  We all have dreams, that is mine.....

I

Day 23 Fish OIl Study

Day 23 of fish oil, and Day 105 of hospital stay....105 days since this nightmare began.......

So she has this spot on her lung that they are assuming is pneumonia since she has also had a few fevers.  The various doctors have had various theories...one says it seems to be viral, one says maybe it is bacterial and another one thought it could be aspiration from her having liquids during therapy.   That  theory bothered me the most because it would mean regression.  Now we do have proof that she had aspirated yesterday but she ate at least 1/4 of a Popsicle and is sick so....we think it was just a one time occurrence.    Well tonight I think the mindset is it is NOT aspiration pneumonia, probably viral since she has been "off" for a week or so.  She is on antibiotics just to be safe.  Right now she is allowed to taste things with her tongue, we're just not really going to feed her anything. 

She wasn't as into therapy this morning and I missed our therapy session this afternoon so I didn't get a video.  Maybe on Thursday....

Believe it or not I suctioned her trach out about 4x today.  This is big for me, as much medical stuff as I have had to do, trachs just gross me out and I get lightheaded and once almost passed out.  I'm just trying to think of it as a high tech way of getting boogers out!  LOL  I love to clean noses....I have a thing about cleaning out the little kids' noses and they hate it!  So that's what I told myself today and I did ok.  The first time, I felt a little dizzy after but then I was ok!  The other times were fine:)

OK for the very best news.....Selah's blood work from the first two weeks of the fish oil study is back!   Her inflammation level was 15~ not super high but far above what it should be.  They wanted her to be in the 1.5 range....she is at 1.1!  Her doctor says now her brain should start healing!    The idea is the inflammation in the brain is down, gone, and now the brain should be able to start healing itself:)   I asked the doctor directly if she ever thought Selah would walk again and she says she sees no evidence why not:)  She cautioned that we have a long road ahead of us still but we are totally going in the right direction.  She said Selah has come much further, in a relative short amount of time than anyone here ever thought she would!   She didn't not respond really at all until week 7             day 5 ....and then it was not consistent.   Tomorrow is the beginning of week 15!  She is so much more consistent now! 

So I was feeling quite down until we got the blood work in and talked with the doctor.  Now I feel more encouraged. 

So please pray for her, pray that this pneumonia will resolve and that her brain will heal quickly!

 

My two favorite Chinese......LOL

 

Sarah and me

 

 

The men in my life!

 

 

Selah trying to push out of her chair!  When I wouldn't help her she turned her head all the way to the other side so she didn't have to look at me.  My goal was 1.5 hours in the car seat:)  We made it

 

Day 22 Fish OIl Study

Well, in many ways today was a great day.  Selah was very responsive and worked well in therapy.  She held her head up.  She moved quite a bit.  She swallowed different things.  No fevers....BUT after therapy when a nurse suctioned her there was a question on whether she had aspirated some of her Popsicle.  No one knows for sure but as of now she is off anything by mouth until she has a certain test (can't remember the name of the test`nothing easy like a swallow study of course....)  so we are having that set up. 

Every doctor I spoke to yesterday said the little spot (that no one is 100% sure is pneumonia) was NOT from aspirations!  It was in the wrong spot for an aspiration type of pneumonia. 

We are not too worried about things, she is doing so well over all and with therapy.  I am planning on videoing her tomorrow during therapy so everyone can see how well she is doing.  Please keep her in prayer!!!!

The plan is now....for her to be transferred next Tuesday on Dec 4th.  Well see......that will be our 112th day here.  It's hard to think we will ever leave and we're kinda ok with that.  We'd like to leave her with the same child we came here with....

More Snow pictures

Me on the deck of the RMH with snow!!!

 

 

Steve's first snow ball

 

 

 

Winter wonderland

Shad had a blast making snowballs  this was his first one.  He slid all over the deck and used up all the snow LOL

 

 

 

 

this Florida car has some snow on it!

 

 

Can you tell we are excited about the snow:)

 

 

 

Day 21~ Pneumonia

 

Selah is half asleep in this picture.  I had Jon on the phone & put it to her ear and she turned her face towards the phone:)  she tried to get as close to it as possible.   She loves her daddy!

It's official Selah has pneumonia.  It is a small suspicious spot but she did spike a fever this morning and we know she has been battling a cold since last weekend.  Probably if she was up and moving she would have not gotten pneumonia but thankfully this is just a small spot and she should be better soon.   She is not requiring oxygen and even is just using her "nose"  Please pray for her that she will have no complications!

Of course this changes things, we won't leave until she is over this, probably 7-10 days.  I can't say I'm sorry that we aren't leaving!  I really want for the doctors and therapists to see Selah as she recovers.  So if we leave next week, she will be at 4 weeks on the fish oil.   Maybe we will see some significant changes by then.  That is my hope!

So please continue to keep her in prayer!!!  Thank you so much!

SNOW! Day 20

 

My oldest playing in the "snow"

Shad had some snow on him but you can't see it

 

 

 

 

Sarah and Daddy

 

Sarah and mommy

Selah had a good day.  Jon was with her today.  She was up in her chair and frowned at the nurse as soon as she came in LOL.   She had lots of good head movement today and her cold is a little less:)   she watched Sesame Street on the DVD player too. 

We had a little snow today, we made the best of it....we want more snow:)

Please keep praying for Selah....Monday will be three weeks on the fish oil.....we are seeing some progress we want to see more!

Day 19 Fish Oil Study

 

Yes Selah is watching Sesame Street on her DVD player!!  I bought that DVD player "in faith" the first time she grimaced and we could tell she was "waking up" some!  Now I love to see her watching it!

 

I thought this was a cool picture last night before the Thanksgiving Dinner at the RMH with all the kids at the table...reminds me of that picture I've seen before of the table set in heaven:)

 

 

So today is a quiet day for Selah.  She has lots of mucus that she is getting out.  She is coughing some and just blowing it out of her trach.  She just has a cold nothing serious but you can tell she doesn't feel like  herself.   That picture of her is for real, she is actually watching the video.  She turns her head when she is done.  She watched it through two times then turned to the other side of the bed. 

 

I know alot of folks don't understand how she could be considered to be in a coma now since she looks so normal.  Well think of it this way,  have you ever had drugs for a medical procedure?  I did for a colonschopy earlier this year,  after they were done, I was still "out of it".  But I was talking some....but my brain was altered.   That is not exactly how she is but that is a good comparison.  Comas have different levels to them.  She is in a very light coma right now.  There are times during the day that she is not responsive even with her eyes open.  It's hard to explain and I didn't understand until we lived through it...

 

 

We still don't know if we are leaving on Tuesday or not....we are supposed to find out on Monday.   How's that for keeping it real?  

 

Thanks for all your prayers and please keep praying for Selah!