What Christmas Spirit?

Every now and then I read some other blogs and find mine is sorely lacking!   Today I read some that had all kinds of Christmas things to do like cute little appetizers, and crafts to do with your kids and gingerbread house parties.....LOL  You won't find that here!  The best I do with appetizers is to get a bag of frozen turkey meatballs, pour them into a crock pot, pour in a jar of BBQ sauce and turn it in on....Voilà  you just got an idea for a Christmas appetizer!  LOL

As far as crafts go I HATE crafts!  Yep I hate them.  I've tried a few things over the years but never could get into them.  I'm all about the finished product and I can not stand mess.  And I really hate decorating too.  Now this year I did decorate for Christmas but I didn't do it at home, I did it at the church.  We haven't had a tree since Sam started walking!  I could just see him pulling it down on his head!  We did have one in our hotel last year, some friends put it up but we watched Sam like a hawk. 

I just pulled out all the kids Christmas presents because I hate them being in my closet.  I got them wrapped and put behind the church's Christmas tree since I have no where else to put them.  Shad was a bit concerned that someone would open one LOL!  I told him not to worry!  I absolutely HATE wrapping Christmas presents.  They are so hard to wrap,  Have you noticed how thin wrapping paper is now?  I was wrapping something with a sharp edge and I ripped it before I got it under the tree.  I had to tape it up.  And BTW we ran out of regular tape so I was using "nursing tape"  OH well.....  But my heart is grateful we have the finances to buy Christmas presents for our children.   I don't want to sound like an ungrateful whiner!   I love to give gifts to my kids, especially things I know they will like, I just hate all the wrapping that goes along with it!


So not too many cute tips here for the holiday season:)  I can't even get a decent family picture done!

One thing I did do faithfully was Christmas cards and a Christmas picture of the family.  We have lots of older family and older friends who aren't really on the computer so every year till last year, I did a family newsletter, including a family picture  and mailed them off.  I loved sending them because I know how I love getting a card and picture from old friends.   My college roommate just sent me there Christmas picture and I loved getting it.  So far she is the only one this year other than our car insurance salesman who sent us a picture of his office staff LOL

Well at this point in my life, no Christmas cards or pictures either:(  I guess I am Scrooge!  I did buy some Christmas DVDs (old ones we'd previously had on video) for us all to watch.  We watched most of Elf thus far......  We did catch the Duck Dynasty Christmas show last night, since we had it on DVR. 

I'm not a big holiday person, any kind of holiday unless it only includes time off from work with no additional obligations, like say Labor Day....no parades, nothing to put up on FaceBook to thank anyone for doing anything, no shopping or presents or decorating......YEAH for Labor Day!   That's my kind of a Holiday!  I'd make a really good Jehovah's Witness...they don't do holidays at all!  Not even birthdays!  Wow can you imagine the lack of stress in your life if you didn't have to celebrate the holidays?   No obligations....no worrying if you should get Mrs Smith a present because she might just get you one.....  Sounds good to me!  I found holidays very stressful! 

Anyhow with that being said, I do my part!

So today is a lazy day at our house, no teacher or therapists.  This is Shad's last day of school for the year and he had a field trip to go bowling.  He just got in and said he got a strike!  Jon is off today too!  They guys are going to see "the Hobbit" and I'm hoping to go see "the Madea Christmas movie", maybe that will put me in the Christmas mood!   There is much excitement around here about the Hobbit movie!  Plans are being made and a whole big group is going, tickets are already bought....we have some Hobbit fans in our family and some of our friends!  Me and the little people will set this one out.....

Selah seems very aware this morning.  I know you all loved the pictures from last night.  It was wonderful to see her so awake and moving!  Believe me it does my heart good!  I just pray that that will continue! She tends to move the most around 5-7pm but I've never seen her move so much!  I just loved seeing her do that and looks so like herself again!  Please continue to pray that she will improve!   My prayer for our family is that Selah would come back to us and that we all stay healthy and together....there is nothing else that matters to me!   Thanks for your prayers for our LaLa! 

Look who is lifing her head!

 

She did this all herself!  I saw her and took some pictures but didn't' have the memory card in.  I didn't know that so I eased her head back, thinking she wouldn't' put it up again.  Then as I realized that I couldn't' get the pictures she moved her head right back up! 

 

 

She also moved her head from side to side.

 

She does this sometimes at night but I don't know when I've seen her move as much as tonight.  The nice thing is her heart rate was low, so it wasn't' aggravated movement.   When she is stiff and upset, I don't really count that as movement, it's almost like a reflex type of movement.  But this was great!

 

Just had to share this with you all tonight!!!!

Pictures from Jon's 50th....

 

 

 

Love my smiley girl!   

 

 

 

 

 

Eating at Sonny's:)

 

Selah was determined to look away from me as soon as I got the camera.  How she knows to do that I don't' know!

 

Selah is doing something NEW...

she started her tongue movement during her 1st HBOT sessions yesterday the nurse made a clicking sound with his mouth and she would stop moving her tongue.   We kept doing it to her and everytime we'd make the noise, she would stop moving her tongue.  I know that is a little thing but it was like a game we were playing back and to. 

 

Today is a bit cooler in the Sunshine State, maybe we will have temps below 70 degrees:)  It's still beautiful and my little one are outside now playing.  Just wanted to share these pictures, I am determined to get a good Christmas picture this Sunday!  I've not gotten any of Selah dressed up nice lately. 

Happy 50th Birthday Jon

Happy 50th Birthday to my husband Jon....a half of a century he has been alive...
It just seems like a very big milestone.  I can not believe I am married to a 50 year old!  He can get the 15% off at Beal's on Tuesdays LOL  In fact I am really excited about the discounts he can start getting!  We are going out to eat tonight and I said I was going to dress HOT since I'm his hot young wife:)  It's just seems so funny to think my husband is 50....I am right behind him but still:)

Jon has been a great husband.  We've gone through hard times and glorious times together....but through it all we've made it together.  I'm thankful for his life, glad that I've shared 24+ of those 50 years and hope to share many years to come!!!!   
Happy Birthday Jon!~!!!!

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A year ago today we left Rochester bound for Florida.  Selah was flown from Rochester to Jacksonville where she was admitted in to Brooks Rehab....  We drove down and it took us two days to get there.  I remember leaving on a cold day with snow flurries.  We were sad to be leaving as we felt she was safe at Strongs' Hospital.  We had no idea what kind of care she would get at the rehab and we had quite the right idea....the care there was horrendous in my opinion.  For all the months she was in Strongs, we knew what to expect from the hospital, even tho we were living in limbo in every other area of our lives.   It was a very very sad trip home.  We were silent as we drove out of town.  When we came in to Rochester that August, we came in high spirits, with a happy van load of kids, with great hope for Sarah's sight to be restored, we came after a summer of wonderful new family memories with our new girls.  We came to show them off to all our Rochester friends....as we came into Rochester there was a HUGE rainbow.....as we left there was nothing but clouds and snow flurries....and a quiet van, with a missing car seat and a missing little girl.... My heart aches just thinking back to last year.   I think the reality of our "new" life was hitting us.  I also think we had such hope that she would recover while she was still in NY......

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But this year.....


Steve took his driver's test today and passed with a high score.  Now all he has to do is turn in his paperwork and get his new NON restricted license.....and our car insurance rates will go up! 

Sam, Sarah and Selah are working with their teacher this afternoon. 

Selah seems ok, starting to have lack of poop problems again but we are giving her juice to try and help her tummy work naturally!  Every time she gets a little "off" I get worried, but she seems fine today. 

Shad is in his last week of school before Christmas break and getting ready for his field trip on Friday...the count down has began:)

Thanks for praying for Selah, last night she seemed so aware of things.....

Another Insurance Fight

Another Insurance Fight......say it is not so! I spent over an hour on the phone with our drug insurance......we are having issues with getting the "magic" medicine Tobymixion...that has kept Selah out of the hospital and kept our trach infections at bay.....I'm not going to even write out all the details yet but basically it was so bad today that I called the Governor and left a message with the person who he had designated for me to call if I had any other issues....  This drug is one we have to have and we need to be able to buy it in Florida NOT through the drug plan's company because the co pay will be so high.  We already pay $100 a month for it.  What a mess....can you imagine what it will be like when Obamacare happens????????????

Then to top it off, a friend of mine is going through a really hard time and many people will be hurt by decisions made by others....I am heartsick.  Please pray for my friend, I will share when I can!  IT is a VERY serious situation. 

Selah seems just a little "off" which is always worrisome.....her heart rate went low last night and then today she got upset on the stander after about 45 minutes and her heart rate was up some.  She has been so stable, we notice anything off now....

Sarah and Sam sure are enjoying their academics teacher.  She is excited about working with the kids and you can tell it.  They both respond very well to her.  In fact they are jealous of her when she is with the other one!  That is a very good sign!  It's a little hard for us to work with though LOL, we are constantly moving kids around! 

We still have wonderful weather here in the Sunshine State, I was walking outside today and it was warm, with a breeze and I thought how wonderful living in Florida is:)  And I have so many paperwork projects done....I guess so now I can spend time on fighting the insurance company yet again.

Tonight I am disheartened.....at the fight I am always in.....at the world....at the lack of care for orphans....at what my children have endured as orphans..... at systems that leave children in orphanages ...... Surely some people forget they will stand before the God of this Universe one day and give an account of their lives and the deeds they have done......

Monday morning.....

I went to bed at 9pm last night, Sam laid down by me and was so sweet.  He kept rubbing my arm.  I actually was going to let him sleep with me but Jon had to finish his eye drops and I couldn't' stay awake any longer.  This morning I got up at 7am ready to  see all the teachers:) Got the kids up, dressed and fed and was ready for PT at 9 am.....and it went on till 4pm!  Plus a sweet couple in our church came to clean the Fellowship Hall from all the fellowshipping yesterday:)   So it has been a busy day as always!

Steve decided to not open the Xbox he had ordered and sent it back today!  YEAH!  I LOVE how he has gotten his priorities straight.  He has lost 15 pounds!  And he has wore out a jogging track around our house/property.  It's great to see him back in shape and working out.  I was happy to drop off that Xbox at UPS!!!  WOOHOO!

The little kids got to meet their new academic teacher today.  She will work with all three of them starting tomorrow.  She made a good impression and they all took to her including Selah.  Sam was really trying to show off LOL

Well it's been a good day, got lots of stuff done and am going to try and get the presents wrapped.....

Please pray for Selah, for Shelly as she is in Ukraine in the midst of all this protesting.... pray that nothing will hold up their adoptions!

Church Christmas Dinner

 

Today was our Church's Christmas Dinner

I meant to take pictures BUT.....I got up at 5 am to cook the turkey so needless to say, I forgot about pictures until the very end!  The dinner was a great success.  The church was packed! I should have taken pictures to have for Sundays when it is not packed LOL!   We had to add tables in the fellowship hall:)  Love it:)

 

 

 

I did get one picture before everyone left.  Selah had already gone home.  She and Sarah had on matching outfits.

 

 

 

 

Our communion table with the nativity scene on it

 

I am beyond exhausted.....the last week has caught up with me.  I am looking forward to going night night tonight!

 

 

Well Shelly Burman is on her way to get her babies on this icy day for most of the US (not us in Florida)  God be with her!!!  $1480 has come in in just 24 hours!   Now she has a matching grant so that means whatever comes in is doubled up to $500! 

http://gracehavenhome.com/families/burman-family/

 

Please give, share, pray....thank you so much!