Day 25 Fish Oil Study

This was an eventful day!

First Selah....although she still has a slight fever, she did great in therapy.  she is handling her secretions good which is important.  Her therapist shared with me that she sees daily improvement with Selah.  Today she needed just minimal support  to sit on the side of the bed.  She can tell that Selah is doing most of the work.  Selah is also clearly showing when she does not like something.  She will push back, away from the therapist. 

When I walked in today Selah lifted her head and both shoulders off the bed and leaned in towards me!  I love it, that is usually reserved for Daddy:) 

We had a telephone conference with Brooks Rehab today.  We just had some concerns and wanted some answers about how things will go.  I clearly shared WHO Selah was BEFORE the accident so that they all understood she was NOT  a typical eight year old.  She has gone through alot in her life.  She has the language barrier, the institutional issues, and the developmental delays against her.  I must say I feel they put alot of effort into the conversation.  All their main staff were there, head of nursing, head of therapy, the doctor and several others.  The way Rehab works is you only stay as long as you meet goals.  It is totally dictated by Insurance....all the rehabs we have talked to have told us that.  Their average length of stay is 19 days....to me that is not even time to get to know a child much less help them!  Of course every case is different and we will be advocating for her the whole time.  I think I was able to clearly tell them who Selah was and what we want.  They were very responsive and positive.  Our doctors were in with us on the conversation and really encouraged us. 
The Rehab asked that ENT see Selah.  The speech pathologist who has been seeing Selah feels in her gut that there is an issue with her vocal cords.  They may have been damaged when she had her breathing tube put in or it could be a result of the accident, that that area of the brain that controls the vocal cords was damaged.   So ENT is going to scope her and get a good idea of what is going on.  Having an answer will let us know how to proceed in her speech therapy.

So the plan is still to go next Tuesday unless she still is having fevers then it will be put off until  December 10 or 11th.  We will see what she does.  We want her to be as healthy as possible for the trip and so she will be ready to participate fully in therapy.  Right now she is still a little off....

We did an interview with the ABC station here, it will be shown at 10 pm on Ch 16 on the local cable or at 11 pm on Ch 13 (ABC) on FRIDAY night  He is also going to contact the national ABC and send them info for us for Extreme Home Makeover:)   It was a positive interview, they have all been.  Sometimes talking about the accident and the aftermath is a little hard.  Sometimes it blows my mind at how far we've come...it just stirs up emotions in me.  We still have a long way to go!  Please keep praying for our girl!

Many things happening in the adoption world....

Yesterday a friend of mine son passed away.  You can read his story here http://bringinghenryhome.blogspot.com/2012/11/henry-is-finally-home.html
We are all heartbroken for this wonderful family who loved this little guy so very much.  His mom Carla has been an encouragement to me over the last few months and she is passionate about adoption.  She is the one who told me about the need the Basas family had....  so please say a prayer for this family.  We know Henry is with our Lord but the pain is unbearable to them!!!  If you'd like to give towards his funeral expenses, here is how you can give http://networkedblogs.com/FkBQQ

My sweet friend Vera is home with their new daughter!!!  Joey & Vera "lost" two children they were interested in adopting and then God brought them across this sweet girl's path....she just got home yesterday http://specialingredientlove.blogspot.com/

At the girls' institution there was a little girl that stayed with us as much as possible.  Her family to be got all their paperwork in yesterday....so happy for them!   So happy for her!!!!   She has waited for so long!   Thank God she has a mama and papa coming for her.... The last time I saw her she was sitting on her bed crying because we were leaving with the girls...now she has  family coming for her!!!!!!        http://reecesrainbow.org/48954/sponsorsayer

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!