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!!!!

 

 

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!!!

 

 

 

 

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!

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. 

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!

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!