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! 

 

Operation Christmas Cheer!

"Operation Christmas Cheer". http://the-scenic-route-momto6kids.blogspot.com

"Operation Christmas Cheer"

'Operation Christmas Cheer' is a project that will help provide Christmas to over 3500 orphans in 35 orphanages throughout Ukraine who otherwise will not get to celebrate Christmas due to lack of funding. I'm looking for 35 families who would like to sponsor one orphanage each. The children will be blessed with a Christmas gift, a Christmas party that will have yummy food and snacks plus a Christmas program celebrating the birth of our Savior.

This would also be a wonderful project for your Sunday School Class, your church, your office/place of employment, just between friends, or extended family members. I expect these orphanages to be sponsored fairly quickly, so contact me asap via comments on this blog, FB, or email me at momto10kids@ymail.com and let me know which orphanage you want to sponsor. As each orphanage is chosen, I will mark them as "Sponsored". 
Sponsors are asked to donate or raise a minimum of $100 per orphanage and send their donations, along with the name of the orphanage they are sponsoring, directly to Life2Orphans via the link and/or address below no later than Dec. 25.   (their Christmas is later than ours is)


Sponsors, if sending donations via PayPal, click on the link below:

*** When you go to the link below, under the main picture of the kids there are the words "Donate Online" in blue. Click on those words and it will take you directly to the L2O paypal donation page.

http://www.life2orphans.org/cms/node/83




Sponsors sending donations via US postal service, send your check here:

Life2Orphans, Inc.
[ORPHANAGE NAME/PROJECT]
6420 E. Waltann Lane
Scottsdale, Arizona 85254

 All donations are tax deductible.



**The orphanages below currently have no sponsors for Christmas:


1. Gorlovka, 290 children ages 7-17
2. Green Forest, 187 children ages 6-18
3. Izium, 55 children ages 1-16
4. Khmelnytsky, 94 children ages 0-4
5. Nadvirna, 80 children ages 0-4
6. Pervomaysk, 92 children ages 7-14
7. Shakhtyrosk, children ages 4-adult
8. Svalyava, 156 children ages 0-4
9. Ushomir, 190 children ages 6-16
10. Yalta, 70 children ages 0-4



**The orphanages below have at least one sponsor, but multiple sponsors are encouraged since that will provide more funding for the children. Feel free to choose from this list of orphanages to sponsor as well.

1. *SPONSORED* ~ Antoshka, 60 children ages 0-4
2. *SPONSORED* ~ Bolgrad for the Deaf, 70 children ages 5-17
3. *SPONSORED* ~ Chernivsti Baby House
4. *SPONSORED* ~ Dnepropetrovsk, 180 children ages 0-4
5. *SPONSORED x 2* ~ Druzhkovka, 226 Children ages 4-35
6. *SPONSORED* ~ Kalinovka
7. *SPONSORED* ~ Kharkiv #1, 120 children ages 0-4
8. *SPONSORED* ~ Kharkiv #2, 120 children ages 0-4
9. *SPONSORED* ~ Kharkiv #3, 105 children ages 0-3
10. *SPONSORED* ~ Kirovograd, 120 children ages 0-4
11. *SPONSORED x 2* ~Kremenchuk, 100 children ages 0-4
12. *SPONSORED* ~ Makiivka HIV/AIDS, 93 children ages 0-8
13. *SPONSORED* ~ Ladyzhin, 120 children ages 4-adult
14. *SPONSORED* ~ Magala
15. *SPONSORED* ~ Roschitsa, 44 children ages 3-7
16. *SPONSORED* ~ Source of Life, 35 children ages 3-17
17. *SPONSORED* ~ Torez, 260 children ages 4-adult
18. *SPONSORED* ~ Yolotchka 120 children ages 0-4
19. *SPONSORED* ~ Zaporzhia
20. *SPONSORED* ~ Childrens House of Chernivsti, 40 Children ages 4-11
21. *SPONSORED* ~ Odessa #3, 165 children ages 0-4
22. *SPONSORED* ~ Green Forest #2, Baby House, 92 Children ages 0-7
23. *SPONSORED* ~ Happy Childhood (formerly Children's Hope), 40 children ages 3-16
24. *SPONSORED* ~ Teterevka, 90 boys with SN's ages 5-30
25. *SPONSORED* ~ Kmitov, 70 children ages 6-16
26. *SPONSORED* ~ Boyarka, 110 children ages 0-4

 

Thank you Debbie Hannon for this!!!!  And always thank you Life 2 Orphans for all you do for the orphans of Ukraine!!!!!

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I wanted to share this project that Debbie is spearheading and that Life 2 Orphans is doing in country!  I personally know Life 2 Orphans and I have seen the good work they do in Ukraine!  I know the money will be used wisely and for what they say they will use it for!  L2O works in Torez where our girls are from and I saw them daily in the institution working with the children and even with the adults!  I thank God for what they do for the children and mentally handicapped adults left behind!  

 

If  you'd like to be involved in this, when you send in to Life 2 Orphans please put it in honor of Selah and Sarah!  I love to know how their story helps other children!!!

Our hotel suite

 

Sarah in the living room  (love the tree)

 

the boys in their room

 

our room!

 

Jon cooking grits for Sarah

bath room

 

 

Thought you'd like some pictures of our hotel suite!  It's nice to have space:)  And the three flat screen tvs are nice too!

Day 42 Fish Oil Study

 

We went to Mandarin United Methodist this morning and was asked to share in their Sunday School class that has been such a blessing to us.  It was really a blessing and we enjoyed being with everyone and felt surrounded by love & concern.  Then we joined them for their Christmas Cantata and it was beautiful.  It was a Celtic theme and Sam loved it!  He enjoyed it so much, he was enthralled the whole time. 

 

After lunch I went and stayed with Selah this afternoon.  I took her out by myself for the first time and really enjoyed it.  They have a small park on the campus of the rehab and we went there.  I wasn't nervous at all with her by myself.  The weather is beautiful and warm (so sorry to my northern friends!!)   She did not have any therapy today so I did range of motion on all her limbs and was able to move her knees better than I ever have before.  This is her 2nd day on the new drug and in my opinion she seemed more aware.  One thing I noticed is, while I was talking to her nurse, Selah was looking away from me.  I began to rub her arm and she turned her eyes and head towards me!  I've never noticed her move quite like that when touched.  She also seemed to move her head back and to alot more than usual.  I am pretty realistic and try not to exaggerate anything but I really think I see a difference!  Maybe tomorrow it will be clearer if she is responding as that is the 3rd day and the day when most of the responses start from this med. 

 

She seems to be much better now that she is on meds for the infection she had.  We're not seeing as much guck coming out of her trach.  Hopefully she will be able to go back on the "speaking valve" tomorrow.  She seemed like she was moving her mouth today both sides of her mouth.  Sometimes we have just seen the muscles move on the right side but today I saw them move on both side and her tongue move but without having the speaking valve on, she can't make a noise. 

 

I know several folks have asked me to explain about where Selah is in her coma.  We had been told by our doctors in NY that she was in a level 3 or 4 coma based on the coma scale they use.  Here the doctors have said she is in a persistent vegetative coma (which is what Terry Shiva was in)  We had felt Selah had progressed beyond that stage.  I think it is hard for people to really put her in a certain box because of where she was before the accident.  So if I understand correctly, the doctors here ( or really the psychologist) feels she is out of the coma but in the PVS which is not a good thing....  who knows....

 

So please pray for us tomorrow as we work out more details for Selah.  We are not happy with several things including the plan to discharge her on Christmas Day!  We want her to be worked off the trach and we want to see much more therapy.  Please pray for Selah for that this new med will make her more alert daily. 

 

I had fun tonight at the church's Joy fellowship's Christmas party!  It was good to get out and get to know my new friends better:)

Day 41 Fish Oil Study

Selah was started on the new meds today.  She hasn't had any reaction to it and it usually takes about 3 days before it begins to affect a child.  We are hopeful that it will help her.

I had alot of errands to do and laundry so Jon stayed with her today.  She only got 30 minutes of PT this morning.  He took her outside and she seemed happy.  It was a beautiful warm day in Florida.  She is not having as many secretions which would make us think the antibiotics are working. 

Today was 4 months since the accident....I was just so sad.  I had gone to the mall to get my hair cut and to buy Jon a shirt for church but I didn't belong there.  Everyone was so happy but my heart is so sad.  I just feel like we had it all and lost so much 4 months ago.   Those 3 months we had at home with the girls were the most absolute happiest days of my life.  I was content with my life, I had my boys and now these wonderful little girls.   I enjoyed every moment of those months.  Several times I can remember telling Jon that I had never been happier in my life....  right now that happiness feels far away. 

Grief has come in waves over these past 4 months, intermingled with hope.  It is a hard place to be at.  Tonight my heart is heavy, I'm worried and I certainly am not in the "holiday" mood.  Having other children, makes me have to push through the feelings but it is hard. 

I don't usually ask for prayer but I'm feeling very overwhelmed.  Physically I've had some weird aches/pains and my neck is so tight I can't move it but in one direction by the end of the day.  I realize our bodies are affected by stress.  Throughout today, I've had to remind myself "do not fear", some days are harder than others and this is definitely one of those days.  I also find that when I'm not with Selah I worry more about the future.  When I'm not with her it is easier to think about the problems and challenges ahead.  When I am with her, it's just Selah and the challenges don't seem as bad. 

Watching the news is beyond heartbreaking.... life is so precious, our kids are so very precious, we don't know what lies ahead....love your family....

Heaven today

 

Credit: painting by John Lautermilch

 

So sad......praying for the families....

 

 

 

Day 40 fish oil study

Our first full day in Florida.  We went with Selah to all her therapies.  She certainly was "off" again.  She had thick green guck coming out of the trach and was still on oxygen.  the culture came back positive and now she is on antibiotics.  It bothers me that this was not noticed until we got here and I started pointing things out to the staff.   Obviously she is not doing all the things she normally does but we did see her do one new thing.  When quickly moved to her right side ( to mimic a fall) she does startle and reacts in an alarmed way. 

We had a long conference with our main doctor and staff to get clarity on some issues.  Our main concern is that she gets rehabilitated, and gets as much services as possible while she is here.  She was placed in a 2 week "evaluation program"  That is not exactly what we agreed on during the conference call we had.  We did agree to start with that with the belief that reasonable goals would be set and achieved and she would meet the requirements for the insurance to keep her here.  Once we got here, it seemed that only the two week evaluation program was being considered for her.  There is definitely a difference in opinions between us and them.  It was explained to us that her brain is slowly healing and that no therapy would help her get better any quicker.  Therefore rehab won't do much for her at this time.   That is NOT our opinion nor is it the opinion of various therapists we have had over the years for Sam.  (in fact most of the time I've felt that Sam had been pushed too hard at times) 

I am not sure what is going to happen.  We do get some positive feelings here and I think if she were higher functioning they would give her more but they don't because of her lower functioning ability.  That bothers me.   We did like the doctor's approach to the meds, she is interested in taking her off of as much as possible that could give her sedation!  I'm thrilled with that and all for it!  Also tomorrow she will be started on a new drug called Amantadine this is a drug that seems to help children with brain injuries.  In a study 63% of the children saw significant changes within 3 days.  The changes included increased alertness, initiations and verbalization and decreased agitation.  Please pray that this will work significantly for Selah without any bad side affects!!!!!!!!!!

In my opinion, the outlook for Selah by the staff here is not good.  They seem to think she will have increased problems with the spacity (stiffness) and may need a pump placed inside to give her continuous meds to combat the stiffness as well as other issues.  Although they are very respectful and pharse their statements gently, it is depressing.  They tend to point out the negatives and not the positives.  We are realistic, please do not get me wrong- I am the Queen of Realism but we also have hope.  I told them in our meeting that we have seen how far she has come, without any regression (until now) and that only gives us hope for the future. 

My philosophy as a parent of a child with disabilities is to give the child as much therapy as possible and work the body, which in turn stimulates the brain.  I've been told that by other therapists and doctors.  I've done that with Sam and if you know us, you know how far Sam has come, much farther than anyone ever thought he would.   This philosophy that they are sharing with us goes against my gut feelings and everything I've been told for the past almost 9 years. 

There is not alot of options for us to be honest.  Our insurances will only cover so much and obviously we can't afford to just go anywhere we want to get therapy.  If you have any real suggestions, or if you are a millionaire and would like to pay her therapy (lol) , please feel free to share with me.  Believe me, if there were any real options to go to after here, I would be doing them.

I'm confident in God tonight, He has led us these past 19 weeks and He will continue to work things out for Selah.  If you know me, you know I'm not naturally "at peace" with things if I don't agree with them.  I will continue to advocate for Selah and I believe I know what is best for her and I will go with my gut instinct about things.  Please pray that she will respond more and that they will see the potential in Selah, not just the negatives.  Pray that the staff will see our commitment to bring Selah back as far as possible and want to work with us in a stronger more pro-active way.  Pray that this new medicine will work mightily in her brain!  And that she will 100% tolerate the decrease in some of the other meds and this new one being added with no side effects.  This has not been the easiest day for us.  Jon is sick and feels down, which is not how he usually is either.   We have so much responsibility on us, it is easy to feel alone.

The other kids had a great time today in our hotel suite, they fixed lunch and watched tv:)  They called us to tell us what all they were doing. they are loving it here!  (but they miss their RMH friends as do we!  The hotel is wonderful but we do miss the interaction with our friends! But are loving the privacy!!!! )