Monday, January 21, 2013

Day 78 fish OIl Study

Sam loves his haircut
 
 
Yes she gave him a shampoo and he loved it
 
Happy boy
 
 
Selah is sick and had to be suctioned alot today.  She did fine in therapy but is obviously not feeling good.  I was so sick this morning  I was afraid to go to the hospital then I find out she is sick too!  I ended up not going because I was afraid I might get her sicker. 

We are keeping her on the Ritalin, not expecting much until she gets better.  She is going to be put back on antibiotics.  Hopefully in a couple of days she will be fine.

I have this thing if I'm sick I drink lots of tea and take lots of vitamin C so I'm hoping I'll be fine by tomorrow.  I'm feeling better tonight....

I did take the kids to get their hair cut today and they all look so much better LOL   As you can see from Sam's pictures....he enjoys getting a "buzz and a shampoo"  more than any child I have ever seen!!!

Please pray for Selah that she feels better soon!










Chance to help Ronald McDonald House of Rochester!!!!

Compu-Mail, a Buffalo based marketing and printing firm, will be awarding $5,000 to one of five charities nominated by their customers. Ronald McDonald House Charities of Rochester was a finalist, and we need your vote!
You can vote once each day until February 14. Use the link below, and please share with all your friends!
 
Thank you for logging on and doing this for RMH!  They did so much for us!!!!!

Pictures!

Last weekend on our way home!
 
 
 
 
 
 
Sarah....
 
 
 
 
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Jon with his dad and two brothers Scott and Jim on their dad's 85th bday!
 
 
 
Sam with his tie on!
 
Thank you to a friend Janet who figured out how I could load pictures:)   I have some more good ones but I wanted to do a test to see if this would work:)
 
 

Sunday, January 20, 2013

Day 77 fish Oil Study!!!!

Last night Selah required a little oxygen.  The nurse felt like she was sleeping so deeply that she wasn't breathing hard enough.  Other than that she has done great.  I spoke to the weekend nurses and got some positive feed back.  The day nurse felt that Selah was more alert than last weekend and actually was looking at her when she came in the room.  The night nurse felt her tone was good and she was more relaxed.  The oxygen thing was a bit odd as she is not sick or anything.  We are planning on keeping her on the Ritalin another week just to see if we see a few more changes. 

We are back in Jacksonville after a good Sunday with our church.  I was NOT feeling the most spiritual but sometimes just fellowship  with folks who love us, can be a balm.  Jon's brother came to service and went out to eat with us after,  that was great.  We also ran into some friends~  one friend BJ, did the beautiful quilts for the little kids and now has done about 14 hospital gown type PJs for Selah to wear at night.  They are beautiful and all kinds of different themes from nursery rhymes to tie dye, she will be cute in them and they are so convenient at night.  Then we drove back on the way here we saw a big buck and a doe:)  Jon gets excited to see wild animals. 

I seldom get sick but I am fighting a cold...the kind of a cold that is your put your head down...your nose will stream down!  UGH!  Vitamin C and hot tea usually gets me well!  It worked in NY and I'm counting on it now!!

Still having issues putting up pictures on here.  I tried using the church computer but it seems to be my blog not the computer.....UGH!  I hate issues like this especially when I have some great pictures!!!

Please pray that Selah will have a great week and progress!  Thank you all!!!!

Saturday, January 19, 2013

Day 76 Fish Oil Study

We got up and got everyone ready and went to see Selah this morning before we left.  The kids all have a little bit of a cough or runny nose so they stayed outside just to be safe.  It is so hard for me to leave her to come home overnight.  She was calm and her tone was great today and I just wanted to grab her up and bring her home with us!

We've been driving some country roads most of the time to come home and avoiding the interstate.  It's less miles but you can't go as fast which drives me crazy!  I'm a Type A+ personality while Jon is a type B all the way!   Opposites Attract in our case:)  So we stop at the same Golden Corral in some little town, I think it is Eustius Fl and I swear I don't know how people eat while staring at our family!  I can get very sarcastic and there are days when it is all I can do, to not make a public service announcement along the lines of...."I will throw mashed potatoes at you if you look at us for more than 3 seconds!!!!"  Ok rant over....  I try to tell you all I'm not real spiritual....LOL  I just think "what would Madea do???"   If you don't watch Tyler Perry's Madea movies you are mising out....  they are just so real and funny to me, I guess I can relate to them! 

We drive by Merle Haggard Juniors house every time we go that way.  We only know it is his house because he has signs up saying that....BTW, He is not the singer it is his dad that is/was.  For some reason that cracks me up too...  I just don't get it....

It's bittersweet to be home. Unless you've lived away from home for months on end, there is nothing more relaxing than being at home!  With all your junk!  I immediately put on my stretchiest old sweat pants and junky tshirt! It just feels so good not to have anyone around.  But on the other hand, we can not stand being away from Selah.  It's one thing to be at the hotel a few miles down the road...but to be 4 hours away is hard. 

Some have asked why don't we just bring Selah home...at this point, she is eligible and needs 24.7 care.  We can not even get an agency to give us a few hours a day. That is why we are waiting for it all to be in place.  If we chose to leave right now we would have NO nursing care whatsoever and we just can not do that!  We are really hoping for some answers this week, by Tuesday.  If not, we will have to push for answers.  We can not continue living like this and my husband needs to get back to work.  It's complicated for us.  Jon is preaching each Sunday at the chapel and at our church.  He is glad to be back at least that much but he needs to get back to work full time! 

God has been so good to us through so many different people....we are just awed by the kindnesses shown to our family!  As you know Mandarin United Methodist has paid for/contributed points so  our hotel bill has been covered!!  On top of that they send us meals almost every night:) 
 As well as they have sent us gift cards and gifts....they are an amazing bunch of happy folks!  If you live in the Jacksonville area, and don't have a church home, they are a good group of folks who are ready to welcome you!

We got home today to a friend who sent us videos and games!  And another friend wo sent us prayer shawls, I'd never seen one before, thank you they are beautiful!  We also received a check from the Correctional Foundation a great group that my husband has been a part of for years!  That was a blessing!!!!!  And I want to thank a friend from NC who sent me a gift to go and get a massage a few weeks ago.  I went and felt pain free for a couple of days and plan on going back:)   We've been blessed by so many different people over these past 5 months.....we can only say "thank you" and promise to "pay it forward" as we reach out to others!!!   It's been over 24 weeks since we left home and 23 weeks since the accident.....thank you for everything during this time!!


Thank you for your continual prayers for Selah and for our family.  Please pray specifically that she will continue to hold her head up more and that she will get stronger.  Pray that the Ritalin will work and the fish oil will continue doing its job!  Pray that the right nurses will be put in place and that we can get word this week of when we are coming home for good!!!  I ache to be home with all my family together but I also know that we have many respondsibilites and live outside of town, we do not ever want to put Selah at any risk by doing something dangerous just to be home.  I learned my lesson.  I really pushed for Sam to come home as soon as was possible when he was a newborn and that was a BIG mistake!  I just thank God he lived with all the issues he had and with NOTHING in place to help me!  So having learned that lesson, I am more cautious.  I also know if I just say "forget it" and come home, Selah will NEVER get the things she needs...how do I know that?  From Sam....after he was already home, our pediatrician tried his best to get us some nursing care and never was able to get even one hour a week and Sam was on three machines!!!!  So we pray and wait...   Up until the last few weeks I have really been content where ever we were at and never tried to rush anything but it's been so long and now we are so close to home....it just makes us want to be home.  It would be one thing if she was just progressing and getting hours of therapy...but that is not how it is at all. 

Friday, January 18, 2013

Day 75 Fish Oil Study!!

Selah got her fish oil and mixture today:)  But even better than that.....taking with Dr Sears' staff last night encouraged me so much!!!   As I reported Selah has had improvement on her MRI in the gray matter and in the frontal lobe.  I was glad but it hurt that we weren't "seeing" any new responses....   Well we were told that this is exactly the scenario that another patient (who went on to recover completely) had at exactly the 2 month mark in the study!  And he was in a deeper coma than Selah is so we were very encouraged by that and wanted to share it!  It's hard at times to think things will change.  But it was good to hear this!

Today Selah held her head up some, not as much as yesterday but she still did it.  I cut her nails and she yanked her hands away from me.  She hates her nails being cut!  We love any response we get from her. 

Tonight Jon & the boys has gone with some friends to a really cool place called Latitude 30 ~ it's this huge complex that has all kinds of entertainment!  Steve keeps taunting me with pictures of his food:)   Steve and Shad deserve some time to themselves for all they do for our family!!  They ate and are scheduled for bowling in a few minutes.  Shad had counted down the days, then today the hours until they would go:)  Thanks to our friends Bryan and Bill for setting this up and for Lattiude 30 for having us.  I thought it would be too much for the little ones, so we did supper and now baths....I'm hoping they will go night night early:)  Sam is snoring on my bed after a warm bath!

We hope to hear something on Tuesday about the nursing situation.  They are working on doing background screening on some of the new nurses they have hired. 

So thank you so much for all the prayers for our sweet Lala!  I have a little hope once again as we see some new improvements and hear that encouraging word!  Please pray that God will have mercy on her and that He will touch her brain and allow it to heal.  And that He will touch her body and take away the stiffness she has.  Thank you so much!




Thursday, January 17, 2013

Day 74 Fis Oil Study

Well today is day 74 but the mixer isn't here so no fish oil for Selah.  The fish oil is mixed with Poly (something) to coat her stomach and help her intestines absorb the fish oil better.  It also protects the plastic in the syringe and in the tubing for her  feeding tube.   It should be here tomorrow.

She held her head up a little yesterday and even more today!  The therapist said she held it up for 2 full minutes!!!!!!   We love that! 

Jon took her outside for quite some time today.  She loves being outside. It relaxes her, I can't wait to get her home so we can be outside.

I stayed with the kids today at the hotel.  I ordered all their home schooling curriculum.  We are staying with the same curriculum their school uses.  They will be working on the weekends and over the summer!  So I guess we are official home schoolers:)  I promised my friends I wouldn't start wearing denim jumpers LOLOL!  When I go to thrift stores, I have an unhealthy pull towards them....I liked them back in the 90's!   In fact I have to really watch myself or I have been known to come home with something I would have worn in 1992 :)

We were doubly blessed tonight with a pork dinner and a meatloaf dinner.....Glad I am wearing pajama pants, I think I will go to sleep early tonight:)

Still waiting on the nursing staff.  Hoping to hear something tomorrow.

Thanks for all your prayers for Selah, they mean so much to us!  I know God hears them all!!!!