Thursday, January 31, 2013

Day 88 Fish Oil Study Home is nice!

Selah had a good night but her heart rate was a bit up around 6:30 am so I got up and held her for awhile a couple of hours but it was good:)  We got a good night sleep last night.  We had the nurse who will do most nights and he was nice.  I have to be honest I find having a man in our home a bit more awkward than a female nurse for several reasons but he was kind and professional.  I come from a law enforcement background and I can't forget the things I know, but we have a camera and honestly I do trust my instincts and we both felt good about him. 

Today we had a great nurse who will also work with us on a regular basis and she also was WONDERFUL!  We gave Selah a bath and then she sat on the floor and did a pedicure.  Selah had some old hard dry skin on her feet but not anymore!  I took her outside for a while in her wheelchair and had to fight the tears, thinking of her walking around the yard before (even tho she wasn't a very good walker)   I sat with her on our little patio and thought of last summer when we had the little kiddie pool and I'd sit outside with them and let them play in it.  It hurt....

We moved around her room some last night and today Steve hung up her picture and butterfly.  This picture is what we see down the hallway...

I have to tell you all that Steve and Shad have been so helpful these past few days.  Without their help Jon couldn't have left me to go back to work.  Even with the nurse, everything is time consuming right now as we get everything in order.  I really am appreciative of the boys and all they do.  Shad is so sweet, he will go by Selah's room and just go in and talk to her.  I tear up sometimes listening to him. 

Steve is waiting on his curriculum and we need to go pick up Shad's books, maybe tomorrow....then school starts:)  The kids played outside today which means Steve and Shad pushed the little ones on the swings for about an hour:) 

Tonight my friend Jan brought us supper ( actually she brought us several days worth of suppers!) and it is cooking.  It's good to start seeing our friends!

I wanted to say thank you to a friend BJ, who took a hospital gown and used it as a pattern and made Selah some of the cutest most unique gowns for night time!  They are adorable on her and all the nurses comment about them. 

So my emotions go from between, sad remembering the past, contentment for the present that we are all home together and some hope for the future....sometimes within a matter of minutes.....  I feel I'm on a roller coaster....  I keep reminding myself "do not be afraid"  I wonder about the days ahead and most of the time I can trust that God will carry us and provide.  Sometimes I feel life is hopeless...again usually within a matter of minutes....Sometimes the responsibilities of my life flood over me like a wave and I think "this is  just crazy!  No one person or family can do this!"   But I'm hanging on to that word that was given to me back in May...  "Something BIG is ahead for your family in the next few months, do NOT be afraid, many will see"   Sometimes I tell God "please don't let "many see" me fall to pieces"  "Let me glorify YOU in all that I do"   So I try not to be afraid.   Talk about learning to lean...do you remember that old chorus?  "Learning to lean, learning to lean, learning to lean on Jesus....."  I sang that song with gusto when the other thing I had to worry about was taking a test or something stupid...LOL  I had NOT a clue about really learning to lean on Jesus...   Learning to trust when life is not the dream you thought it would be, learning to trust when you are afraid and have no idea how you are going to do the next however many years of life you have before you.  Before the accident I had some worries about the little ones' futures if they  outlived us or if one of us got sick...Oh Lord, those were just little tiny worries back then.  Now the full responsibilities is beyond overwhelming BUT I think of the story Corrie Ten Boom told...

Corrie Ten Boom wrote that she had asked her father about having the strength to die for her faith, and she was concerned that she didn't have it... and her father compared it to him giving her her train fare for the train when she needed it and not before...   I know I"ve ripped that story to shreds but I do think of that that He will give....whatever we need when we need it.   So I trust in that kind of faith.  I may not have what I need right now for what is ahead in the future but God will give it to me when I need it....

So I'm living moment by crazy moment...thank you for your prayers...

Please keep praying for Selah's recovery!

Wednesday, January 30, 2013

Day 87 Fish Oil Study HOME!

There is NO doubt in my mind that Selah is a HAPPY girl!  She is so relaxed and truly we are glad to be home!!!

Finally sitting on her swing....
 
 
I know she looks tired...there is a story behind it:)
 
So last night was a "baptism by fire" to say the very least.  To be nice, I will say the nurse was not qualified to be Selah's nurse (or anyone else's for that matter)  We did everything from changing her to running her feeds, giving her the meds...the nurse did suction her...WRONGLY...
 
I called the agency at 8 am and told them she could not be Selahs nurse again....  They were amazing and have someone coming tonight in her place.  I am leaving out a whole lot of the story but let me tell you I shook for hours last night afraid we'd do something wrong.  Selah was at first having oxygen levels that were too low and at one point I even turned on her oxygen.  Then her levels got normal and she kept a high heart rate (120-130) most of the night...she did not sleep at all.  I swear she was uneasy too!  That is why she looks so tired in the swing.  She slept for awhile but we didn't want her to sleep much because we wanted her back on her schedule.  So we kept her up in her chair al day and she did great.  She seems really glad to be home, no doubt at all! 
 
We kept her "nose" on all day, the cover of her trach which makes it harder for her to breath than just breathing the humidified air in the blued tubing that you so often saw around her neck at Rehab.  They didn't think she tolerated it very good...well she wore it all day when she was in NY and now again at home and did great.  I personally think it is good for her to work a bit harder so she is "thinking" about her breathing. 
And is works her lungs harder which is good!!! 
 
We had the most amazing nurse today who more than made up for last night!  We had a great day with her and really got Selah's room in order and of course there were some more things to pick up for her at Walmart.  One of my Jax friends had given me a gift card and also a friend of hers friend had sent us several gift cards which covered her thermomator, some new sheets, some bigger clothes ( lol!!!)  and all kinds of other little things we needed:)  Thank you friend of a friend of a friend's friend:)
 
We also have food~ I went real grocery shopping with Steve this afternoon:)  I bought lots of fruits & veggies and really want us all to start eating better!!!   I was so tied in the store that I actually did not think I was going to be able to drive home but I made it and was able to work through it.  But after a stressful day and night and no sleep and I couldn't eat because my tummy and stress do NOT mix...I thought i was going to crash!
 
But I got home to our dear friends Ken & Lynn who delivered us all kinds of soups:)  Everyone ate and was happy!  What a blessing friends are!!!!
 
So our day nurse had to leave at 6 pm and our new nurse couldn't come on until 10-11 pm but we have managed quite well!  Selah is behaving and I did the meds.  Her room is all fixed up and I had bought some more shelving and those little plastic drawer things...it looks great~ Steve,me and the nurse got it all arranged and it is perfect! 
 
I went in to move her and her legs are so flexible I could not believe it!  I called for Jon to come in...they look better than since the accident! I really didn't want to wake her up but I had to test her range of motion and it was amazing in her knees!  I can not get over it!!!  They felt so soft and relaxed rather than hard as a board as they usually feel!!! 
 
Sometimes I am hesitant to tell things like that because I don't know if it is going to be consistent but it was so different, it almost scared me!!  In a good way:) 
 
Anyhow we have survivied and are glad to be home.  Jon is going back to work tomorrow and is looking forward to seeing all his folks ( staff and inmates!) 
 
Thanks for all your prayers and please contiue to pray that she will fully recover!!!!
 
 

Tuesday, January 29, 2013

168 days later....

168 days ago our life changed forever.... 

168 days ago a doctor told me that Selah would not live through the day but she did and now 168 days later she is home. 

We left the hospital a bit after 1 pm.  Jon rode with her in the ambulance and I drove the kids.  He got home first and met with various people who were here with various things....we finally got here and I just sat down in our big soft rocker and held her for awhile.  It is good to have her home.

Everything is beyond disorganized which as you knows drives me crazy and we have an inexperienced nurse tonight which is not helping matters.  Selah is so tired that her oxygen levels are down so I turned on her oxygen.  Dealing with all this is a "baptism by fire" & I doubt I"ll sleep tonight unless she keeps her levels up. 

But I am glad to be home!  She seemed to understand things some and was certainly looking around in a way I've never seen her do before.   She totally missed her 4pm meds but is as calm as she can be and relaxed.  

Selah with one of our fav nurses
 
 
 
daddy leaving with her in the amblulance
 
 
She's all loaded up
 
 
they are off!
 
 
HOME!!!!!!!!!!
 
I realized as the bed was delivered that I don't have her any sheets!  Thank goodness I'd kept the twin size from the boys' room!  I have to go and buy her some PURPLE sheets tomorrow:) I'm a person that likes things to match:)
 
Tonight even tho I"m a bit terrified, I am glad to have all my children under the same roof again and I"m so thankful that Selah is here with us.  I thank God that she lived and surprised everyone.  Now we are just praying that she again surprises everyone and that my two wonderful dreams come true.  It almost seem like they could now that she is home!!!!
 
Thank you as always for your thoughts and prayers!!!
 
 
 
 

Monday, January 28, 2013

Day 85 fish Oil Study ~plans ~ and a big prayer request

My FB status....
 
What a day I got up and went to the courthouse....almost cried - last time I was there was with all the kids getting the paperwork to re adopt the girls....then dropped off things at the thrift shop, then spent more than an hour waiting at the pharmacy for Selah's (only got 8) prescriptions and Sam's eyedrops...pharmacist was SO sweet he made me cry. I totally lost it and had to go to the bathroomom to calm down. Then we stopped by Olive Garden for lunch and saw our fav hostess who had wondered where we'd been and she was just shocked by everything.... then we drove back to Jax and have some friends throwing us a little good bye party tonight....tomorrow is the big day! I've spent HOURS on the phone today getting everything delivered etc....I am TERRIFIED.....but glad she'll be home
 
My FB status sums up my day.  Lots of running around and taking care of many last minute things.  We called and checked on Selah several times it reminds me of "adoption day" we didn't get to see the girls at all...it was ALL about them but we were too busy getting all their paperwork done.  Today was the same, everything  was all about Selah too.  We did run and see her tonight and say goodbye to our nurse that we like so much.  Selah looked great and her hands were so nice and relaxed.  When I am with her, the future is not so scary....
 
We got back in Jax in time to pick up the rest of my pictures that I finally got printed out at Walmart.  I just flipped through them and they took my breath away...Selah at home playing....the last section of the 3000 + pictures and I see all these pictures of her.  It's one thing to see them on the computer but to have them printed I just wanted to hold them and look at every little gesture and thing she did..... 
 
It's been a very emotional day for me.  Loosing it at the pharmacy was a first for me and probably for them too.  But believe me tears work, they had all my medicines done up and bagged by the time I got out of the bathroom LOL .  No they were absolutely wonderful and their kindness just touched me and I couldn't handle my emotions. 
 
The stickers are on our vans now~we are legal:)  No more tickets for us!   Being at the courthouse just reminded me of the day we all descended on it right before we left for NY.  I went to get all the paperwork to readopt the girls and Shad too.  It was such a hot day, but it was meaningful to me as it was the beginning of the last step we would take legally for them to be ours.  (legally they are all ours, it's just the best thing to have them readopted in the US and then they can get US birth certificates.)    We had also gone there earlier to get Sam and Steve's passports done so I think of the girls' adoption in relation to that building. 
 
While I was doing all of that, Jon took his van in to be serviced and he bought a security camera set for Selah's room.  We feel more comfortable with her having a camera in there that we can monitor.  Our friend Jim who is an amazing technical guy thank God because we are not put it in for us. 
 
We had a good going away party tonight!  A bunch of our new friends from Mandarin United Methodist came by and we all ate and had a good time laughing together.  Hope to stay in touch with all of them! 
 
PLEASE be in prayer for my good friend Bryan who God used to arrange all these fantastic relationships for us here in Jax.  He is a college friend who was friends with Bill...who got his church involved .....  (it amazes me how God works things out...)  Anyhow Bryan is facing a major medical issue!
 
Bryan has had an accident some time ago and has had many physical problems since.  In December things got worse as he experienced partial paralysis on his right side, at the time they thought he might be having a strok e,it happened so suddenly. They are attributing it to the cervical and thoracic portion of his spine.   He has already had 2 surgeries in the past and has screws in his neck.  But now his doctor feels he may need emergency surgery to see if it is the screws pressing into his neck or maybe a bone spur or something else.  He is meeting with the doctor tomorrow at 1 pm to determine the course of treatment.  They are very concerned about all of this.  Please pray for my friend who did so much for us.  I told Bryan that God saw all the effort he made to help our family ( and all my little former orphans) and that God's word talks over and over again how He hears and helps those who help others....  And Bryan took it on himself to make contact with his friend and arrange all this for our family.   It was an amazing step for him to contact someone on our behalf and for all of this to work out!  We appreciate him and just want to see all of this work out for him hopefully without surgery but if there has to be surgery that is be just what he needs to fix this problem once and for all!!!  Please pray for Bryan and put his need on your prayer lists and churches.  Thank you very much
 
 
Thank you for your prayers hopefully my next post will be from HOME!

Sunday, January 27, 2013

Day 84 Fish Oil Study Hope in God

One of our fav nurses worked with Selah today and said she was doing great.  She tolerated a shower.  Last time we tried that, she made sure we paid for it!  She had an hour long storm!  But she did great today and actually seemed to enjoy it.  We are getting a bath chair for her and I'm thrilled that she did good today because I learned on Friday giving a bed bath is hard work!   Her vitals are great today and no issues.

We had a good day at Grace Church with our church family.  It's just good to be together and share life, even when during the trials of life....

This afternoon me and the boys cleared the church and our house of ladybugs.  They have infested everywhere!   You know I hate to kill anything so we got them out hundreds of them on the ceiling in our foyer, I didn't notice them till after church LOL maybe they needed a good service too!  Ladybugs are supposed to be for a garden so my garden should do good if they hang around!!!

What a lovely warm day in Florida.  I wore shorts and a tshirt and sat in the sun for awhile.  It was so calm and peaceful out here in the country.  We opened all the windows, perfect weather:)  Sorry to all my northern friends but at least you can go play in the snow.   And I just got bit by a mosquito...we all have our cross to bear. ....


I also worked on our house I am a person who doesn't keep alot of "stuff" but I seem to have more stuff than usual.  Clean House used to be one of my favorite shows and after watching it, I'd have an urge to go clean out a drawer or two.  So I'm working on going through things still as it just seems like we are too crowded and I have some projects too, mostly including our pictures.  I've got bags "to go" various places and the bags themselves are bothering me.  I did have a psychology minor so I do understand WHY I'm doing this but I can't help but be annoyed by all the little silly projects I have going on....  Basically if I can control some small area of my life, that gives me control, since life seems so out of control for me right now.  So see I can psycho-analyze my own self and save money LOL   "The first step in recovery is to admit you have a problem"  All those student loans were good for something at least:)

YES life is scary and out of control....  I want Selah home so bad but I'm terrified to have her home....  even with nursing, it's scary.  If I didn't have PTSD (Post Traumatic Sam Disorder) I probably would not feel like I did but I know how it was when we brought Sam home from the hospital and in some ways he was more stable but in some ways Selah is more stable.  I could not  go to the bathroom without the fear that he would be not breathing when I came out.  I promise you I am not exaggerate so in one sense Selah is not as bad off as Sam was but he didn't have a trach or a g-tube.  But for years I'd say "I wouldn't repeat that first year with Sam for a million dollars"    I have a blog with that title...I'm not kidding it was rough.  I remember at his one year old birthday party Jon & I both just wept because we honestly never knew that he'd make it to his one year old birthday!    Anyhow with the memories of the sheer terror we went through and the many 911 calls that were made during that year, I have some real significant fears about bringing Selah home.   Oh my Gosh ,the stories I could tell you of holding him and suctioning him out and having the 9 and the 1 dialed, waiting to see if we'd have to dial the next 1 to call 911, you have no idea.....  well maybe you do if you've had to care for a family member who was very ill.  We all survived and by the time Sam was 2 years old, we didn't have all those awful issues ( and some issues that never really were identified)  But I kept a hospital bag packed for him/me until he was about 7 years old.....

So I'm elated and terrified at the same time....lots of emotions....

Please keep praying for Selah, pray that she will handle the transition home without getting sick and having to go to another hospital (that happens often)   Obviously I don't want to see her sick but I just don't know if I have the wherewith all to deal with anymore hospitals for awhile! 

I really don't want to whine and make things about me because this is about Selah but I will tell you these past months have been the hardest thing I have every gone through.  I"m thankful that she is alive and we have had her but it's been hard.  When I really get on the self pity trip, I have to remind myself things could have been worse.  Sam and Selah both could have died and I'd be writing this blog from a mental ward somewhere....or Sam could also be in the same situation as Selah is...or Selah could have never ever progressed.  I do have alot to be thankful for.   I bet there are parents who read my blog that they have lost children and thank I"m lucky.... so I do not want to belly ache.. but I'm tired, I'm worn down, my heart is heavy, I am afraid of the future of all the various ramifications ....

I'm a person who usually has alot of HOPE for the future, even when times are rough, I can dredge up a little hope, but I'm scrapping the bottom tonight.   I'm not ashamed to admit it. 

I'm so glad that there are scriptures where even great people of God like David in the Psalms wrestled with depression and fear of the future.  In Psalms 43:5 "Why are you in despair, O my soul? And why are you disturbed within me? Hope in God, for I shall again praise Him, The help of my countenance and my God."

He realized that he was depressed but he also acknowledged his hope was in God.and he realized that he would praise God again. 

People are kind and try to be encouraging to me....I am thanful of that but right now I feel very discaouraged but I do know I will Hope in God. 


Saturday, January 26, 2013

Day 83 Fish OIl Study and "I just can not believe some people"

Selah is doing great!  She has had no issues and is ready to go home on Tuesday!  We got up and left really early this morning so we could finish up our tickets at St Augustine since it is on our way home.  We had tickets for the Fountain of Youth and I really needed to drink some water LOL

After we went there (and it i really interesting!) we went downtown to look at a few of the churches.  We stopped at a Denny's and were sitting and enjoying lunch when we had one of the worst experience of rudeness ever!!!!

We were at a long table, Sarah was in a high chair at the end with Jon on her left and me on her right.  Shad was sitting nxt to me and Sam was sitting between Jon and Steve.....   A large group of people came in, I'd presume a family, and were to be seated next to us.  As I was feeding Sarah two of the children actually got between Jon and Sarah and literally got in her face.  The mom was just looking on seeming mildly amused.....OH MY LORD!  Without even thinking I raised my voice and said "Get away from my child NOW!"  "Go to your mother"  They all treated it as a joke!  I said to the mother "this is extremely rude, you need to teach your children manners"  She just looked at me and asked to be moved...well I don't think our waitress saw what had happened so she didn't react like the man in Texas.....

For the record, these kids were elementary age perhaps one of them was middle school age, not little kids. 

Please if you have children, instruct them how to be polite.  Unless they are paying money at a freak show to look at someone, then tell them  do NOT stare!!!!!!!  I was a mom for 9 years before I was a mom of a handicapped child and I can promise you my son never did something like that and if he had ....he would have been sorry!  I would not have been standing around smirking....

And I do NOT want to hear that that was an opportunity for me to have a "teaching moment" with those children....I do believe we had a "teaching moment!!!!  It is NOT my place to teach some brat how to act!  But I hope they remember how I reacted and think twice before doing something like that again! 

It amazes me how some people act...you would think in this new age of "tolerance" that people wouldn't stare and act rude around little children!  Lord knows I see enough other things that I chose to not gawk at and I don't mean disabled people! 

I was raised about as "un politically correct" as possible...some of you would die if I told you how my family was....I'll keep it to myself... But even I knew enough to not stare at others...  I just can't get over people!  But my days of letting it make me cry or feel icky is so so over....  Now it's "Right back at you"  If you have enough "whatever" to stare, I"ve certainly got alot more "whatever" to call you out on it!  My kids are beyond precious to me and I'm thrilled that I'm their mama and I will protect them even if they don't understand it!  Because maybe the next time that person sees a handicapped person, who might be personally hurt by the staring, they will be afraid to stare and be rude!

Guess what?  Anyone reading this could have a car accident and become incredibly disabled or it could happen to your child....and believe me, you would not want to be stared at!  It's awful to be looked at like you are some type of freak! 

Ok my ranting is over for now......

I have some great photos but can't get them to post.  I enjoy seeing the boys having fun and really learning something at the same time.  Beats Disneyland any day!  Sarah liked being in the stroller and wearing a skort:)  Just like Mama!  The last time I tried it on her (it's a size 3T it just slid off...this time it stayed up:)   She will always be thin, dainty, she has the body of a dancer but I loved to see that soon she will be outgrown this!


When we got home tonight I went through our mail for the week and we did not receive our stickers for our car tags!  We will have to stay over till Monday and go to the Tag Agency and get them ourselves.  It must have gotten lost in the mail.  I'm sure I mailed it in back in December or early January at the latest but....who knows....  I'm afraid if we dont' get them then our car will get a "boot" on it and not be drivable.  I've heard that the traffic cops in Jax are really tough!   The nurses were all telling me stories and so did one of my friends!  That would be the last thing we need!

Again thank you all for your thoughts and prayers for our family!  We appreciate you all!


Friday, January 25, 2013

Day 82 fish Oil Study~Headed home! Ticket:(

Well....we are going home Tuesday!!!!!!!!!!!   All nursing is set up for 24/7care!  All equipment is ordered.  Thanks to everyone who made this happen for us.  We heard many who said it could not or would not happen but it is!  Alot of work went into it and we are grateful.

Today Jon did all her care.  I came up at lunch and went with her to her therapies.  Then Jon & I gave her a "bed bath"....ummm that was fun....NOT!  It was ok but I just can't think you can get anyone very clean with a bed bath.  She feel asleep as soon as we were done.  I washed her hair too, that was a job! 

Tonight we are going back to the hotel and packing up everything.  We'll go home tomorrow and when we come back Sunday we'll just bring a change of clothes with us. 

Oh we had a wonderful thing happen to us today...our van got ticketed in the hospital parking lot!!!  Our tag is expired and we haven't got the new sticker yet.  So some idiot from the Jacksonville parking violation~tax collector's office came into a HOSPITAL parking lot to ticket people!  A rehab where everyone has been living in some sort of crisis for months just like us!  I'm all for keeping your tag up but there are times when things overwhelm and you are late sending it in!  I called everyone I was so mad and everyone that I  talked to thought it was terrible but NO one could do anything to help me!  Evidently this hospital is targeted alot by the great ticket givers of Jacksonville!   Isn't that just special?  Most of the patients and their families have already been in a hospital for months and now they are in a rehab, some far from home like us.  I am disgusted that they would target a hospital parking lot....go to Walmart, or Target, just down the road....

We are excited to go home, but we know life will be very different than before.  It will be odd to have nurses in our home 24/7.  That will be hard for our family.  But it is best for Selah to make sure she has a qualified person working with her.  We hope it time that she will be off the trach and feeding tube and we won't need nursing care for her but for now it is what we need. 

She will be transported by ambulance home.  One of us will probably ride with her.  So after almost 6 months, Selah will be home soon!

Thank you all for your thoughts and prayers!

Thank you all for your prayers, they are appreciated!

Dream

I had the most incredible dream last night....we were home and i was working in my garden and walked back into the house and Selah was standing by the front door wearing a sundress and she was still little and as I came in, Jon  came in from the kitchen and sat down and said "I was just about to come and get you, she seems completely back to normal" it seemed like I knew she had improved some but then she was was totally back to "her" normal! She was waving her arms all around like she used to do and one of us had given her a doll to hold and she dropped it.  That was something we were working on with her.  Since she waved her arms around in such an odd fashion (and there was NO medical issues with why she did it)  we encouraged her to keep her arms down and hold something.  It was helping some.  Between the odd arm waving and the way she walked, that is why she was diagnosed with CP in Ukraine.  But she had no CP, it is almost like it was a learned behavior or movement.  We thought so because we saw her watching Sam (who walks on tip toes sometimes) and then she imitated him!  There was nothing wrong with her, she just picked it up from being around him.  she also had a funny scoot on the ground.  The same scoot that the teenage girl that watched her did.    And in the dream she was SMILING! (that didn't happen much!) what a dream, hope it comes true!!!!!

I'm NOT saying this dream was necessarily from God but it was a wonderful dream:)  It could have just been my own thoughts as I usually fall asleep praying for her.  Only time will tell........

I usually have crazy stupid mixed up dreams IF I even remember them! 

It was so good to see her like that and it just seemed so real, like all our furniture was in the right places, it wasn't one of those split up dreams where half is in one place like normal and them the other part of it is in some crazy place.  I tend to have crazy dreams like on I'm on drugs or something LOL

This morning Jon is with her doing all her care.  I'm going in at lunch, still getting all the gunk out of my lungs, I'm at the stage where I wake up coughing the stuff out!  YUCK!    And BTW I was sooooo sore this morning after riding the trolley yesterday! 

Jon said she got annoyed in cognitive therapy and she closed her eyes and refused to look at the therapist.  As soon as they left the room she opened her eyes and was not in the least bit tired acting.  CT is the least favorite therapy of hers ( and ours)  It basically is just to see her responses to pain and loud noise and things like that.  She does not like it and we had thought it had been cancelled but I guess not....

She was looking at herself in a big mirror and then she looked at Jon in the mirror too.  He feels like she is alert today.  We will go outside this afternoon.  Love this great weather! 

Please pray that she will return to her normal.  I always say "her normal" because she wasn't a typical "normal" 8 year old.  but we adore her exactly where she was at!  We picked her exactly as she was and were honored (and still are) to be her parents!!   People tell me that they are praying she returns "even better off" than she was...and I understand that, of course we want our child's life to be great but for us, we loved our funny little girl just like she was and yes we were working with her and getting her into therapy but we were also fine if she never improved.  we accepted Sarah and Selah where they were, knowing there was a chance they would never go beyond that....and it was ok. 

When Sam was born, I adored him but I wanted to "fix" him!  Not so much for ourselves but it just killed me that his life wouldn't be "normal".  At some point, our whole way of thinking changed.  We believe that Sam, Sarah and Selah were "fearfully and wonderfully made"  God allowed their conception and their lives.  They weren't "perfect" in the eyes of the world but they are to God and to us also. 

Of course, this accident changed Selah from who she was and that hurts.  With Sam, we grew to know his "blindness and delays" were part of who he is and we accepted it.  I'm not saying I ever quit praying for Sam but there was such an acceptance in my heart, that most if not all, of the pain was gone.  So for me, it is easier to accept what a person is born with, as being THAT unique person.

Now I am NOT saying we don't accept Selah for who she is right now!  We do and are 100% committed to her even if she never ever gets any better!  But it is harder to accept this accident and what it has done to her.  We want to see her improve.  We will give all we have to see that and do whatever we have to to see her get everything she needs and every chance to improve.  She deserves better than this but whatever happens she will have the best life possible for herself. 

So please pray for our sweet little girl who has her own opinions of what therapy she will participate in!!!  Go Selah! 

Thursday, January 24, 2013

Day 81 Fish Oil Study~ St Augustine pictures

Sam on daddy's shoulders at the fort.  He loves his daddy
 
 
 
 
Sarah and Steve in the fort
 
 
 
 
At the fort
 
 
Waiting for the trolley:)
 
 
 
 
Selah had a great day no issues.  She was up all day in her chairs and did fine.  We called and checked on her a few times.  Very glad she had no issues.  she has done picture perfect!   Tomorrow Jon will be doing all her care through the day till night.  Then on Monday I'll do it.  It's called "rooming in" and we did it also with Sam when he was a baby.

We took the kids to St Augustine and they had a blast.  It was good for them to be out and learning something!  St Augustine seemed more commerical than it was over 20 years ago the last time we went.  I also noticed several businesses closed including the old store that is down by the fort!  I was surprised. The boys loved the fort!  What a sense of history.  So many people have been in that fort for the past almost 500 years.  Old things really amaze us Americans!  We don't have much "old things" so 500 years old stuff is really amazing!  We have pictures of Jon and his family there many years ago...kinda makes me sad, with his mom passed and his dad in bad health.    Jon heard an elderly woman saying today that the last time she was there her children were small....she was probably in her 70's.  Makes you want to "hold the hands of time" tightly....

In high school chorus we used to sing a song that I thought was quite silly at the time..."If the hands of time were hands that I could hold I'd keep them safe and in my hands they'd not grow cold...."  In high school I wasn't about "holding the hands of time"  I was READY for LIFE!  But now with children, I just want to grab and hold Time's hands....maybe push them back a few months too. 

Things are coming into place for us to go home next week...thankful for everyone who has worked hard on our case to ensure great care for Selah!  So many people told me it would/could NOT happen as we needed but I knew it would.  I realize that this is a long term situation and we know everything might not be perfect 100% of the time.  But our expectations will be that it will work out as it should and are committed to seeing that it does.  Really glad that we have a lot of support within the "system" and that many people are aware of our case and unique situation with three handicapped children.  I am glad that during this time of limbo that our doctor here started Selah on Ritalin, per our request, and that we believe we are seeing some improvement, noted by others!  If we had been home, she probably could not have been started on it, since it would have needed to be monitored closely:)  So all things do work out.....

As you all know, I've really have had some trouble with my neck/shoulders/back...I bought a new pillow and it was the best $15 I have ever spent.  I still have issues but probably 50% of the pain is gone.  Today on the trolley, I thought my head was going to fall off.  I literally had to hold my neck with my hands when the road got bumpy.  I'm hoping I didn't rehurt it!  I KNOW my days of riding roller coasters are done!  I can't even handle the trolley on cobblestone streets LOL, this old age stuff stinks!

I've also been fighting the weirdest cold since last weekend.  At some points I am completely fine and then all of a sudden my throat will start hurting so bad, I think I have strep then it goes away.  I have never had anything like this.  I think I am becoming a hypochondriac...actually I am one...I just try and keep it to myself and stay away from anything medical on the Internet or I'll be diagnosing myself with prostrate cancer or something LOLOLOL  I am NOT kidding!  I'm awful!


Some more pictures of today.....

The chaplain counseling with an inmate at the old jail LOL
 
 
 
Shad decided to get on the lap of the sheriff
 
 
 
What a beautiful day in Florida...we actually were a bit warm in our jeans and long sleeves
 
 
 
Shad in the fort.  He really loved it and wants to go back.  I love 9 yr old boys:)
 
 

 
Sarah wants to be down on the ground all the time.  But decided the hard ground of the fort wasn't the best either LOL
 
 
 
 
 
the courtyard and steve's head lol
 
 
 
Shad put himself in the gallows:)  He also loved the jail

Wednesday, January 23, 2013

Day 80 Fish Oil Study ~ going home soon!

WOOHOO!  Just got a call concerning our nursing situation.  An agency has committed and has 24/7 nursing care set up for Selah.  Right now there is only a 12 hour slot that needs to be filled but the staff feel that will be taken care of by tomorrow!!!!!   So it looks like we will be going home next week!  I am looking forward to the next step in our journey.  I believe Selah will get better at home surrounded by us and in a familiar place with happy memories.  We've lived in limbo for so long this almost doesn't seem real!

It will be good for my kids I've felt like the last 5 months have been a time of upheavel for them.  They have handled it well and never have complained but it will be good to get back to a schedule and a somewhat more normal life.  We should get the boys books next week to start homeschooling....LOL me homeschooling....God help them:)   Steve has to take two years of a foreign language and he has chosen Russian!  I'm excited for him and he is very interested in it.  Living for a few weeks in another country does expand your horizons for sure:) 

Selah had a great day.  She was very attentive to us it seemed every time I talked to her she looked straight at me and even followed me some with her eyes.  We had our weekly team meeting and we asked for her to continue on Ritalin.  We aren't having huge changes but there are some small consistent changes we are seeing.  She is on a very low dose of Valium so we are allowing them to double the dose for night time to see if that will affect her tone and make her looser (even doubled it's only one fifth of the dose that can be given!  very low)  It might affect her tone (for the good during the day and make her more comfortable)

Tomorrow we are taking the kids to St Augustine.  It's about 15 miles from where we are staying.  We've always wanted to take them to the oldest city in America but never had.  I kid around and say we have taken them all over the world but never made it to St Augustine:)  It should be fun and a reward for them.  The have been patient and so helpful during this time.  On Friday, Jon is doing his "rooming in with Selah" where he will do everything and I will do it on Monday. 

Today I changed her trach again and this time I did not close my eyes!

She is watching me rather closely!
 
 
 
 
Then she looked at daddy when he was talking to her
 
 
 
This week the trach change was easier for me and it doesn't bother her one bit.  She doesn't wince or act like it hurts!  If she did I couldn't stand that!!  I'm glad I could push past my fears and do the trach.  I have NEVER had anything bother me anymore than the whole trach thing....but I need to be able to deal with it.  It's just funny because it's NOT like I've never dealt with medical stuff LOL!  Sam came home on three machines and had eye surgery within his first month home but he never was on a trach.  Nothing else is as hard as that, I think it is the responsibility of her airway.....that is scary!
 
I don't know if this is much of an issue now since we are leaving next week but if you are interested in donating Marriott points towards our stay here you can contact Bill at wbehrens@comcast.net  and he will tell you how you can do it.   Thanks
 
As always thank you so much for your thoughts and  prayers for Selah.  I really appreciate each one of you!!!!



All Extremes are Dysfunctional

You know I've never wanted one thing to define me!  My life is not just the mom of 5 kids a preacher's wife, the mom of adopted kids, the mom of special needs kids I'm not just a Christian, an American a woman a former probation officer,a blogger, a gardener .....  All those things are parts of who I am,,.

But it is a struggle.  In Real Life, some of you might not even like me!  And I'm sure I might not like YOU either!  LOL (no really I'm laughing...)   I don't "play well with others".  I love people but most of the time I'd rather love them from afar:)  Now I love the disenfranchised~ those are the folks I often feel the most comfortable with, no being fake, not having to be "spiritual", and for the most part not having to live up to some one's standards of who I should be.  BTW the disenfranchised I'm talking about are the ones who have  had their rights or privileges taken away, not in a political way (although that could be the case in some instances)  but  the orphans, the prisoners, the disabled, the old.....

It's so funny to me that I always wanted to be a preacher's wife until I was actually one!  Now I love my husband and I know I married the right person but I'm not preacher's wife material!  I HATE seminars and small groups. Please do not ask me to go to a "women's retreat" or worse a "pastor's wife's retreat"  (been there, done that, one time was way more than enough for me and yes there is a story there that is quite funny but no I can't share it yet)  I would absolutely never go on a "marriage retreat"  UGH!   I do not read much Christian books ( most of them are a bunch of hogwash anyhow) I like theology books ( I mean real theology not "Your 7 steps to financial freedom or Healing or whatever")  Most Christian "music" leaves me cold....   I do love the hymns. And Lord knows I hate Christian TV well actually I will watch it sometimes just to get a good laugh or get good and mad!   I HATE to hug!!!  HATE!!!!  I'm not a touchy feely person, except with my family and there are days when I reach my threshold early on with them.....  I don't like men who are patronizing and they seldom like me since I don't put up with nonsense.  The older I get the less I put up with.  I'm a conservative Republican but I don't always vote Republican but I am very pro-life but I believe strongly in the death sentence (remember I worked as a probation officer many years!) 

I love keeping the earth clean, Green living and I'm a tree hugger, although I know this earth will one day pass away and I really dislike Al Gore....  I believe in eating as natural as possible, no chemicals, no NITRIDES, as organic as possible ( my garden is 100% organic and it is a pain!)  But I really believe fervently in vaccinations and never had the slightest desire to breast feed!  That just seemed way too gross for all of us!  I love animals ( often they are easier to love than humans) and won't kill anything except mosquitoes and ants and flys!  We even take out spiders and roaches (they have their place in the eco system!  I'm not a Vegan but wish I liked veggies enough to be one but I don't:)   I love to read mysteries with a passion, actually I love to read almost anything (except for the afore mentioned christian books!)   Libraries are my favorite place to be!  I love Maps and seldom get lost, I am a GPS:)  I'm pretty smart and confident in my skills, I'm very administrative and see the big picture.  I'm sarcastic ( oh you have no idea....)  I love guns and target practice, I'm a good conservative but not always.... I hate horses ( one of the few animals I do not care for at all)  I love getting messy and real with people, I can roll with the punches and I have learned (especially in the past year or so) to be incredibly flexible in every area of my life.


I love my husband and feel like we work as a team now (for the first 10 or so years it was not like that) I do believe in submission, in the sense if he was truly against something, I wouldn't do it or if he really felt strongly we should do something, I would do it.... Most of the time we agree. One thing that worries me in the "church world" is young women who get married, have kids and have no real skills. It's funny there is this huge swing back to the 50's mentality in some groups. That is scary to me. I made it on my own in college and worked sometimes 3 jobs at once. I had a career until I realized that Sam needed me to stay home with him. I LOVE being a stay at home mom BUT I have the skills to work a real job if I had to support my family. That brings a huge comfort to me! I don't ever want to be totally dependant on one person! I can remember women who were totally dependant on their husbands for everything. One poor women in my church had a mean hateful husband. He controlled her life, how long she could stand around after church, what she wore, how often they saw their grown children (who hated their father) he'd make her walk to work in the rain...my great aunts and grandmother would hold her up as an example of what not to be. All three of them were strong women who worked when it was unfashionable and two of them divorced their husbands! But they always told me to be able to stand on my own two feet. My grandmother almost had a heart attack when I told her Jon and I had a joint checking account! She never had one with either of her husbands! 


 I love my friends & others who aren't Christian but I believe in a clear cut message.  I don't believe a "watered down gospel"   I believe if you are not a Christian, you will not go to heaven.  I personally wish that the Bible wasn't quite so strict but hey I didn't write it!  I have friends that I consider them "living in sin" whether they are living in homosexuality, with a boy/girl friend or just "out there" in various ways, not attempting to live a moral, upright life (according to scripture-not what some particular church preaches)  To me scripture is pretty plain and people crack me up when they try to give "soft" explanations for things...  this is pretty plain in 1 Corinthians 6 ." 9 Or do you not know that wrongdoers will not inherit the kingdom of God? Do not be deceived: Neither the sexually immoral nor idolaters nor adulterers nor men who have sex with men[a] 10 nor thieves nor the greedy nor drunkards nor slanderers nor swindlers will inherit the kingdom of God. 11 And that is what some of you were. But you were washed, you were sanctified, you were justified in the name of the Lord Jesus Christ and by the Spirit of our God.  I also do not think people who ignore the orphans, the widows, the poor ( and i mean the poor ) will go to heaven....  there are too many Scriptures commanding us as the body of Christ to take care of "the least of these" 



I am so not perfect...but I do believe in a standard of living that draws us close to God and to others.  I may not come up to your standard or you may think my standard is too high....I don't know but I do know that God can reach each of us where we are at and help us to reach up higher! 

I feel like I have fought legalism all my life.  When I was a teenager, I was absolutely one of the most chaste girls ( because I was petrified of going to hell!).  But one time I was in my room reading the bible, on a hot summer's day in Florida with no a/c, in shorts and my great aunt Ruby, came in and said "you whore, why are you even reading the bible"   That was a turning point in my life.  I decided then and there I would not allow anyone to ever judge me spiritually by something like that!  Now there are times in my life I needed some judging but that was not one of them!  I've fought spiritual abuse in the church world.  I've fought being put into some one's mold and sometimes I don't think people always realize what they do or try to do to others.  There were several times "in ministry" that I felt we were in spiritual abusive situations.  That's just sad!  I don't even know if the folks realized what they were doing...but looking back (and even at the time) it's easy to see it was unhealthy!   We really really try our best to never put others into those types of situations.  Listen, if the Bible doesn't call something wrong, I'm not going to hop in and tell someone they are "in sin" 

I really worry about several groups in the evangelical church world today.  There are the pentecostal/charismatic ones who seem to want to draw folks in to scam them and then there are other groups who try to draw in folks to lord over them.  I've read some about some of the movements in the church world today and there is some stinking scary things out there!  It's like if there is something good like homeschooling or large families or mentoring some idiot has to go and take it to some weird legalistic degree......how about this quote I learned in Bible college "All extremes are dysfunctional"  I try and remember that whenever I want to go on a tangent!  See this is why I don't "fit in" anywhere...I refuse to be extreme....  Jon and I are probably considered by many to be conservative parents....until we are around other "conservative " parents and then I think we look liberal...but we have our children's hearts~they are our kids but they are also our friends and we actually enjoy being with them 99.9% of the time!

Ever see the movie "Liar Liar"?  I am too much like the actor in the movie that something happened to him and he couldn't lie....(it's been a long time since I saw the movie)  I can't lie....I can' say politically correct things.... I can't make "nice talk" or fake talk.....  Oh there are times when I wish I could just play the game (whichever game it was at the time) but I can't....I absolutely just can NOT do it!  People don't like that.....  So please don't ask me my opinion on something if you don't want to know....I won't say the "right " thing.  It's not that I'm a "know it all" or at least I hope it is not because of that but it's just because I'm a person who can't fake it.  The best I can do is just stay quiet....I try really I do....but I dont' always succeed!

One time I was in a church service, I was in college and there was a very false doctrine going around at the time.  The doctrine was that Jesus would come back in the fall of 1988.  Well I went to a church with a boyfriend and the only thing that pastor could speak about was this false prophecy but he believed it was truth!  Finally one Sunday night the guy was going on and on and on....and  he called the author of the book Dr So and So just one time too many and I piped up and ask "And where did he get his doctorate from???"  It just came out without my control....LOLOL  The pastor sputtered and just went on...I found out he did not appreciate it but come on...obviously the pastor and this guy were wrong!!!  

I hate false doctrine in the church!  I really hate when folks don't know what they believe or how to explain it.  I hate false doctrine that doesn't prepare people for the reality of the sorrows of this life and teaches that God is some big Genie in the sky who will fulfill their wildest dreams.  I hate that that doctrine has crept into the Evangelical churches.....it's awful and it causes so many to lose faith when something doesn't work out the way they think it should go!  Oh the blogs and stories I've read of folks being hurt by others or by false doctrine and who now not trust God with their lives.  In fact so many of them turn away from God 100%.  I've seen in happen to dear dear friends who went through hard times and decided since God didn't provide the miracle they wanted the hell with God....  it's so sad and I know, I was there myself at one time.  And why do folks get to that point???  Some of it is their own fault but I lay much of the blame at the feet of their pastors....  Our church can tell you we don't whitewash the Christian walk and preach that everything is just going to be hunky dory....  I guess that would be really hard to fake for us.....


So it is almost 3 am and I have probably ticked off everyone who reads this blog but this thought has been rolling around in my empty head for days and just had to come out.....remember this blog was created years ago for me and although you are welcomed to follow I do write what I'm thinking about....  Maybe in some odd way this rant tonight has encouraged you to be real and authentic in your faith.  (Although I hate that word authentic  more often than not when someone uses it, they are not  authentic!  LOL)  Another new "christian term" I hate is the word "servant/leader...why do I hate that term?  Because i have heard it preached/taught and primarily the ones preaching or talking about it seemed more concerned about themselves than being real servants.  I find the ones who just "do it" don't have to tell others to do it they show by example!  I will never forget one time years ago, Sam was having an issue with his implant and we were down in the South Florida area over the weekend and went to a bigger church and the pastor was throwing that term around....and he had so many "armor bearers" we couldn't get through to get prayer for Sam without almost having a pat down....I kid you NOT!!!!  I left with the sickest feeling in the pit of my stomach!  "Armor Bearers" really????   Armor bearers are supposed to be helpers, in some churches we'd call them ushers....but most ushers wouldn't be carrying the pastor's bible/coat etc....it was odd....very odd.....  The life style around that pastor made me doubt very seriously that he was any type of real servant/leader.

I know by now you are saying "Judge not"....I just "love" (said sarcastically) how that piece of scripture is taken out of context....usually by folks who don't want their sin or lifestyle judged.... 

There is a balance....in everything.....

Tuesday, January 22, 2013

Day 79 fish Oil Study and precious baby pictures of the girls!

Sarah as a newborn
 
Sarah as a toddler  she can't even stand that good now.  she regressed so much in a year in the mental institution
 
 
Sarah standing....
 
 
Selah when she entered the orphanage.  she was 2.5 yrs old but it doesn't look possible.
 
 
Selah is doing much better today.  Her breathing is good and she went out to therapies.  I was sneezing so much this morning that I was afraid to go and see her but by the afternoon I felt like it would be ok if I wore a mask and didn't get in her face. I asked the nurse and they were ok with it.   I missed her so much, I just felt like I had to see her.  Her tone was great!  She was really relaxed and comfy!
 
Jon did all her feeds tonight:)  He did it perfectly. I spoke to one of the people in the State who is working on Selah's nursing and we hope to hear something tomorrow.  They are working very hard and looking at several different ways to get her nursing.  We are hopeful.....
 
Finally got all our pictures printed out and have about 3000 to put in albums!  I got all our pictures done up through getting to the girls LOL!  Now I realize I have to download some of our facilitator's pictures as he got the first few moments of us meeting out girls!   I have a thing about pictures being in chronological order!   This is going to be a HUGE job!  It is heartbreaking to see Selah as she was...before the accident.  Although she has gained about 12 pounds and looks great.  Thankfully she has never had a stomach problems and the pedisure has put on the pounds.  Her hair and nails have grown so much also.  Her color is beautiful everyone always comments on how good she looks.  Some kids who have a neurological accident don't do so good in these areas. 
 
Please keep praying for Selah!  We want her back to us all the way.  Oh I miss her funny little ways..  I love when I can see her personality coming through.
 
 
 
 

Monday, January 21, 2013

Some more pictures

 
This is blurry, Jon took it right afte I finished the trach the other day.  I don't know if Jon was shaking or I was LOL!
 
 
 
Selah and me and one of our favorite nurses
 
Steve and Sam today before hair cuts
 
Sarah and Steve today talking
 
Shad
 
 
 
Sam drinking
 
So glad to be able to upload pictures.  Today I worked on putting pictures in the albums...I have over 3000 pictures to put in.  Maybe even more than that....I took my memoray cards to Walmart and worked on printing them!  I also made copies of some baby pictures I was given of the girls.  I should be able to  post them tomorrow. 

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!!!!