Thursday, July 25, 2013

Intermission (Part 1)

Sorry to depart from the regularly scheduled program, but well...it's me...what do you expect?

I really do have an attachment post I've written, rewritten, and will possibly rewrite again, but we have had a lot going on (and nothing...figure that one out).

It has been...ummm...hmmmm...lively here (laughing).  Here's just a hint of what's going on.
(These are texts I sent to husband... and two people I trust with my insanity... this morning.)

Me: I.QUIT.PUTTING.IN.MY.RESIGNATION.
Me: Sarah's next in line, but she gave notice too...doesn't look hopeful that Anna will take the position.
Thomas: Oh No you don't.  Resignation denied...
Thomas: The organization values you, can we offer you stock options.
Me: Sorry, it's not the army.  There's no draft.
Thomas: Worse, it's indentured servitude.
Me: Stock? No, Amber has the bovines, not me. (They have a farm and a stubborn cow which you will need to know later.)
Thomas: *Censured due to immature content* (wink)
Me: Haha...just wait....I've resigned...u get the terrifying trio of tornadic turbulence
Thomas: Oh no, directors delegate this to management.  Anna and Max are next in selection process.
Me: Oh no, president must take ultimate responsibility.
Thomas: Responsibility can be delegated.
Me: Yes, but when trio is rebellious it calls for a firm hand by the hierarchy.  I've joined the rebellion, sorry....
Me: Lucky I resigned, Gabe tried to get Ben to put a crayon in his mouth.

Me: I.QUIT.PUTTING.IN.MY.RESIGNATION.
Me: Sarah's next in line, but she gave notice too...doesn't look hopeful that Anna will take the position.
Amber: Let 'em come kick the cow to relieve frustration. Cow is CONSTANTLY kicking  me!!! Agghhhhhhhhh!!!!  We need to blow off some steam.
Me: Yes, I've resigned.  I have more time now.  Join the rebellion.  We have chocolate.

You now know the truth.  This is really (sadly) the way I talk normally.  You DO NOT want to know about today.  Ok, you might, but I even have my limits when it comes to sharing.

It's hot here.  I mean like melting rocks hot...like no need to throw water on me, I'll melt anyway and you can have the ruby slippers.

We attempted last week to go to the park with a sweet friend.  We've both had some "challenges" as of late and we needed a private mommy time walking along the trails with....uhhh.....8+4.... 12 children.  You can guess that worked out really well...you know, private and all (laughing).  I've been wanting to go with some friends I hadn't seen for awhile now (including this sweet friend)....maybe next week.



Gabe has NO fear

This little one looks forward to figuring out how to swing in prosthetics WITH KNEES!

Max and Jacob, Donna's son

 
Donna's lovely family

We held our ground for a couple hours before I had to tap my ruby slippers and get us home.  (Did the witch have to do that? I'm just guessing.  Yes, I'm not Dorthy, so I must be the witch...the crazy one.)

We've continued to have a steady stream of appointments both last week and this one.  Remind me why I think a 8:00am appointment is a good idea...like EVER?

We made it to the ENT last week for possible Apnea (though it may have been drug withdrawal).  There's not a lot of news at this point.



Ben's throat is narrow, as it is with many children that have DS.  His tonsils are small though and that's good.  They took x-rays of his neck and adenoids (we have yet to hear the results).


The plan now is a sleep study (Thomas'll get that one).  After that we will come back for the results and a plan.

Meanwhile....

In between the appointments we find whatever we can do inside (with the heat...remember, I melt).

I mean anything....

 
Even the grand opening of a Super Wal-Mart.  Yes, we are THAT cool.  It wasn't really very crowded, though when the mariachi band began, we called it a day.  Ben didn't enjoy the decibel level.  Poor kid....he liked the Energizer Ears though!
 
At the end of the week we needed to head about 3 1/2 hours away.  We were blessed to go visit my father-in-law and his amazing girlfriend.  She actually took our two oldest girls to a small local art gallery.  Totally sweet!
 
Our car is pretty full now.  Ignore Anna's evil eye. 


Sweet Boy...

Ben was a little concerned and "hides".  The blanket is a comfort.  For him, a trip means he's passed off to someone else.  There was a lot of fear, but we knew it would take many trips just like these to understand we are not passing him off.  Honestly, he may always have some fear he doesn't understand on trips.

We killed about thirty minutes at a local mall.



I almost didn't offer the chance to Ben.  I was afraid it may be too overwhelming.  Ben is a sensory seeker though and really seemed to enjoy it!


Yes, at three (almost four) Rachel (below) already knows how to pose.  We are in so much trouble!

With much effort I got a picture of our oldest (Tom/18) playing guitar.  Why was it such an effort?  See PHOTO BOMB below.
 
Sarah is a complete goof!!!

I know, they are just too serious, I need to have a talk with them.


This boy has decided to make food his main goal in life.  We think it's due to a growth spurt.  Unfortunately we didn't all realize that everyone was giving him food or just how much he had eaten in about a hour and a half period of time.
1 Hamburger
1 banana
1 peanut butter and jelly sandwich
2 hot dogs
Chips
Tomatoes
Cookies
Home made Ice Cream Shake


Sibling Love

Max discovered the CUBE of evil Rubik's.  You know the one?! The one I could NEVER solve.

Here is a pic of grandpa and all the kids.  We have just a few you know?

Though this isn't the end of the blog post...it was a beautiful end to the day.
 
 
Finally yesterday was another "I'minsanemakingan8:00appointment45minutesawayinametroplex" day.  We saw the orthopedist for Ben's flat feet and concerns over him just generally.  With some more x-rays, everything is currently looking good for where he's at. We also received a referral for the Pediatric Disability Clinic and dental (which is Monday...more about that below).
 
Dental is our priority right now, but also the most confusing.  We are working through two different medical systems. 
 
One has normal co-payments and expenses, while the other has no cost to us and we have worked with a lot. 
 
Our cardiologist (whom we love) is of the first group and HAS to be present to do a sedated cardiac echo while they remove and repair his teeth.  I'm sure there is probably a wonderful cardiologist at the hospital that we have experience with, BUT will we have to wait longer for another series of referrals?  Ben needs this work now.  If we brush his teeth at all blood POURS out....no joke.  He doesn't act uncomfortable since he's lived with it so long, but I just imagine the change when it's taken care of.  The risk is there too...so much infection in his little body.  We would love prayers for direction and discernment, also PLEASE pray Monday goes well.
 



 THIS face cracks us up and he KNOWS it!  He makes it all the time!
 

This is proof I was actually there.  I really do exist (in my mind at least...figure that one out).
 

On a serious note, thank you all for the support after the last post.  I really do try to be brutally real here.  There are several emails I need to reply to.  One in particular that I read while sitting in the car outside our doctor's appointment brought tears to my eyes.  I WILL reply.  It just seems like my moments are few and even getting out an occasional blog post is straining my reserves.  Right now I even have three people I NEED to call that I haven't called back yet.  It seems like we are either constantly on the go or I'm just not in a place where I can talk. 
 
 "M", my dear friend that got me through during life in the "U"....I want to talk so bad.  I think about calling EVERY SINGLE DAY and at 11:00pm, when I can hardly keep my eyes open, I realize another day has passed.
 
"A", my friends amazing cousin, it is the same thing.  I pick up the phone to call and there is some minor "emergency" or I look at the time and we should have left 30 minutes ago.  Please know I haven't forgotten. 
 
As for our miracle boy....
 
Sixty seconds brought us such joy.  Ben is in the process of learning to be a child.  He plays with a block, a feather, a little pillow, and a headband.  With all of them (except the headband sometimes), he throws them, picks them up, and throws them again (over, against, under, or around another object).  He does not know how to play with toys or color.  For sixty seconds today, Ben (with no prompting) started pushing around Gabe's car.  You wouldn't believe how joyful a child trying to play can make one tired mommy.
 
 
 
Thank you again for your continued prayers.  They are such a blessing. 
 
BTW.... This is a BIG BIG week for us...Ben's 10th birthday (Intermission Part 2). 
 
PRAYER REQUESTS
 
Immediate: Tomorrow we have a Nutrition appointment.  Upon arriving home Ben lost weight (4 lbs we believe because his activity increased and the drug withdrawl).  We have now (through much effort since he doesn't eat solid food) succeeded in packing three of the pounds back on.  We could use some guidance though and thankfully our insurance covers it. Please pray we learn what we need to in order to help Ben.  Please also pray we are able to get Ben's teeth fixed and heart echo QUICKLY and that the results are good.
 
Ben~At Home: That he continues to seek love.  That he learns to stop aggression to himself and others.  That he learns the value of listening to mommy and daddy.   Finally, that he learns to play with toys (imaginative play) and be a child that he has never had a chance to be.

Me: For healing emotionally and for health (blood pressure specifically, which seems to go up the hyper vigilance that is gradually getting better)...for patience and that I am not easily angered or critical (feeling a little grumpy...blick).

The Family: Please pray for each child's emotional, physical, and spiritual health AND PROTECTION.  That Thomas feels rested and for his professional life (blessing).    Please continue to pray for a vehicle (or a way for a vehicle) to present itself (see previous post about the unnamed prayer request) and finances.  Please also pray we find a new and hopeful "normal".  .
 

1 comment:

  1. Your text made me laugh. I resign about once a week :) I also can relate to the not calling people!

    ReplyDelete

In the joy of following our Heavenly Father, we sometimes choose to proceed with a whisper, a verse, or a downright shove...no matter how we follow Him, the momentum that follows is like nothing we've ever experienced before.

Join the momentum...it is a beautiful place to be. It's not always easy, but then the best things never are.

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