Tuesday, January 22, 2019

A Day in my Real Life

Last Thursday will be one for the book....

To start off we had Horse Therapy.  That means getting the kids up and dressed and fed and out of the house by 9 am.  It's not too bad but it takes a bit of effort.  It's almost an hour drive there then about two hours there and then an hour drive home.  Well I was dying for a drink so we stopped for a Big Gulp!  It was a good one.....

As we are driving down the road, I notice the tire light was on..... then Shad said he thought he heard a pop as we were leaving the convenience store...   I stop at another convenience store-this time to check the air pressure- only 15 pounds!!  We fill the tire up and head for Walmart.  I'm praying that the tire doesn't go flat on us and leave us on the side of the road. 

We make it to Walmart.  I called Jon to meet us because Shad had to go to work  He comes and picks him up.   The nice man fixing my car said it would only be a few minutes so I decided to stay with the kids.  Well it took a bit longer than a few minutes.  We tried sitting in the automotive waiting area but it was small and Sam kept lightly touching an older lady who was sitting by us.  She did not like it.  So I thought I'd put them in buggies and walk them.  Thankfully our respite care worker was with me or I would have never gotten them into the buggies 





See those Big Gulps.... they cost alot of money!









Of course I had to get a new tire and had no warranty left on that particular tire.  So while we were waiting, I walked through the toy section  It made me think I seldom take the kids with me to the store.  With Sam I'm paranoid about germs and with both of them, particularly Sarah people stare at her too much. I'm not an anti Walmart person but I've had some of my worst moments in Walmart with people staring at my kids.  It's not good for me-I'm afraid one day I will really get into it with someone.  When people stare at my kids, I usually get a bit obnoxious.  Other people say to use such moments as a 'teaching moment ' for the folks who stare- I do - I teach them NOT to stare-believe me they remember my "teaching moments"   So in light of the fact it's not a good thing for a pastor's wife to end up in jail I just don't take the kids there.  Believe me they don't care!  It's probably been a year or more since they went with me to a store. 

Anyhow I handed Sam a toy as you can see him holding.  I've done that before, no biggie.....until I tried to take it back!  Sam decided he liked it!!!!  It was so funny and so good developmentally that he understands when something is taken away.  I almost bought it for him UNTIL he took one of those expensive Big Gulps and smashed it.... yep.... I had to clean it up.  He did not get that toy!! 
Sarah only likes certain types of toys so she pushed away everything I handed her. 

Anyway my cheap little Big Gulps cost me alot that day! 

We finally got home around 3 pm.  I gave them a late lunch and baths.  That's another thing I'm very particular about how they look when we go out in public.  I've always been about all my kids but for my little ones, they are completely dependent on us to help them be clean and presentable.  They had helmet hair, Sarah had horse poop on a shoe....they looked pretty grubby! 

That afternoon, Sam kept gagging himself.  He would put his hand in his mouth, he even stuck his straw down his throat.  Years ago he swallowed something tiny so I started thinking he'd swallowed something.  By that evening I was convinced something was wrong so I took him to the ER.  Jon stayed with Sarah and Shad came with me. 

So with Sam's immunity issues (never got a real diagnosis but we all know to be super careful) I didn't want to take him into the ER.  So I went in and filled out the paperwork.  The staff was very obliging.  Then I went out to wait with Sam.  When he was called for triage, he began throwing up terribly so I figured he probably was sick and was trying to tell us.  The staff were so kind to us, they didn't want us to wait outside, it was cool but quite comfortable, so they found us a private area to wiat until we went back.   I couldn't get over the kindness of our local hospital.  But as they were taking us back to the small private room, I saw the sign on the outside said Bereavement Room!  I literally balked and came to a dead (no pun intended) stop! Honestly I had rather wait outside but they were so kind and I felt it would be rude.  So we sat down and waited in there. 

Other than being in the Bereavement room It was one of those rare amazing ER visits where you get the best doctor and nurse and staff in the world.  The doctor did X-ray him and saw nothing.  Sam was so good, the nurse did an IV and he just sat there.  She looked at me very doubtfully when I told her he'd let her do it.  Afterwards she was full of praise, she said he was her best patient of the night including grown ups!!!  So it was just a little fluke I guess.  He has basically seemed fine every since.  Maybe that's his new way to tell us his tummy hurts.  Although he will gag himself if he gets mad so it's hard to tell!

That was a long day!!!

Sam did have surgery scheduled to have his adenoids removed to see if it would help his apneas.  After discussing it with the specialist we have decided to see yet another doctor first.  The ENT didn't think it would help enough to risk a surgery and we did not have a peace about it.  He is on a pulse/ox machine at night that alarms if his oxygen level or pulse go too low.  A few nights ago he had a really bad time.  His heart rate kept dipping into the 40's for about an hour.  We just kept waking him up and re positioning him.  The ENT actually talked about doing a trach on Sam in order to put him on oxygen.  I don't know what to think about that!  I'm not even sure why she'd say that- his oxygen levels are great except for when he is asleep and then they can go in the low 80's with the apneas
There is alot of concern about him being on a CPAP machine because if he took it out of his nose and put it up t his eye, he could literally tear out the cornea implant because of the high rate of oxygen flow.  Sam puts everything up to his eye.  So we have to figure out what to do! 




We had some family time last weekend-got together and went out to eat. 



 Jon and his brothers and Shad:)









Steve is dating the sweetest girl!  We all love her and think she is a Keeper! 




Last weekend Shad went to the annual PK (preacher's kids) retreat.  He had a great time.  They stayed in Orlando and went to Universal one day.    He has a group of friends that are PKs too.  They are 4 other boys- 2 sets of brothers.  One set lives in the northern part of our state and the other lives in near Miami.  He gets to see these guys for all the activities in our district.  They go to PK , youth convention, youth camp and missions trips together.  It's really neat for him to have these guys that can relate to him. 

Today was a busy day for me.  Tomorrow looks even busier.  Sam and Sarah have Occupational therapy and Speech therapy.  Thankfully it's at home.  Then Sam has a fitting for gloves.  Occasionally he has to wear gloves on his hands/lower arms because he will bite himself.  He'd done so good for so long but the other day I had to put them on him.  He actually welcomes them and calms right down.  But it had been so long they were too small for him!  I just ordered him some "chewerly" it's wearable bracelets and necklaces that he can chew on if he needs to.  Sarah doesn't do it.  Selah did some before the accident.  We will see if he will use them. 

We have had a little "winter" her in Florida but it's supposed to warm back up.  It's been great.  The kids were out today for several hours on the swings. 

Hope you are having a good week and no crazy days!


Wednesday, January 16, 2019

Happy New Year!

Well I hope everyone had a Merry Christmas and a Happy New Year!  December was a whirlwind for me with everything going on and I have to admit I am glad the holidays are over.  Just call me Scrooge but I like things back to normal. 


Here are some pictures from Christmas and New Years

Look at Sarah standing!




We took some pictures before church during music practice. 
















The weather was not good enough for Selah to be at our Christmas Eve service




New Christmas PJ's on Christmas Eve






Selah with some of her Christmas presents





Steve & Shad Christmas morning



Sam and Daddy



Sarah with new toys





New Year's Eve service and Selah came in her new gold dress








People probably wonder why we always take pictures at church.  One reason is it's such a part of our life and the other reason is everyone is together and dressed nice LOL









To be honest Sam enjoys the "fake horse" more.  His issues are very different than Sarah as he has CP and stiffness.  They work with his on stretching exercises. 



Always trying to get his legs straight


Sarah petting her horse! I hope you can get it to play





Steve has started his Master's program and is working as a Graduate Assistant.  Everything is going good but he's still a bit nervous about the classes he is taking.  He is doing a lot of writing.  Shad will be starting college in the second spring semester in March.  He is finishing  10th grade work on line now. 

My husband is starting his 22nd year as a chaplain and has also become what is called a home missionary in our denomination.  All it means for him is increased paperwork but more access to curriculum and things for the inmates that is paid for by our denomination.  We were appointed as home missionaries in the 1990's when we worked in the inner city of NYC. It was not my more favorite memory.....I'll leave it at that LOL

Moving on...I've got a new goal of 11,000 steps a day.  So far I've been on track- most days I do more than 11,000 but some days I don't -so far it's evened out LOL   The idea is if a person does 11,000 steps a year- it's basically 2019 miles.  I love things like that:)  I've also discovered skinny jeans.... that's a story in itself but how did all my friends know about skinny jeans but me?  I bought a few pairs and gave away all my old regular jeans.  They are like magic jeans :) :) :)   I was testifying to all my friends and they were all like "yeah we know"...They knew but didn't tell me????   Then I tried to remember the last time I'd bought jeans and it was 6 years ago when we were stuck in NY for all those months after the accident.   I'm more a skort/shorts type of girl.   I live in Florida-I seldom wear long pants!!!  But now I'm prepared which is a good thing because it seems like our two weeks of regular winter is happening now!  But the skinny jeans can only work so much magic!  I did buy Jon a couple of pairs for Christmas. But he's an old Levi's boy and was not too thrilled with them. 


Well I hope your year is off to a good start.  New Years are a fresh start for me (I also like Mondays-I'm a freak what can I say?)  But as I get older new years are also frightening for me because we don't know what the year may bring.  I guess I've lived through enough now to have some fear of the future.  At the end of last year, I felt some anxiety about welcoming in a new year but there's nothing I can do about it except trust the Lord who has brought us through all the other years to bring us through this year safely.