Our Fortnight

There has been a ton going on over here.  A lot of serious and very heavy things.  So much that I haven’t felt like blogging. 

I’ll try to sum up quickly.  Let’s start with the happy stuff!

August 10th we went to the Weather Museum and Becca took pictures for extra credit for her history class of the Holocaust Museum.  We enjoyed the museum.  Becca has now finished both history classes.  4.0 College GPA thus far!

Our family has decided that Alex is the cutest little boy on the planet – I constantly overhear “You are the cutest little boy EVER!”  “Why do you have to be so cute?”  We ADORE you Alex!

Checking out textures – always feeling things.  He loves to be thrown up in the air!  We love you  Alex!

Adorable when he sleeps!                        This is as far as he’ll lift his head and not for very long.  Pretty normal with kids with visual impairment, but the PT doesn’t like it!

A dear friend sent us a light box for Alex.  Here he is checking out his star necklace – fascinating!  Cuddles with Becca.

Therapy on the ball with Bella                  Cute Lizzy feeding him

Playing around with play-doh and the dog

Bella – outside time and such a wonderful gift!  Her paternal grandmother sent this fabric along with some fabric for Alex.  I am thrilled!  Other than a single picture on her dresser, Bella had nothing from her family.  Now we are going to make her a quilt.  It will be so special because it’s from her Grannie Annie!  Grannie Annie also sent an early birthday present for Bell – new pink sheets!

Cute Joy who had been picking flowers with Jessi

I have been trying to buy a Bountiful Basket for forever and Kathie finally figured it out!  :)  The fruit was gone almost instantaneously, but we were able to plan some meals around the veggies.  A good thing so far!             Jason ordered some shoes from Zappos.  He LOVES their customer service. The shoes were great too!

Sammi and her paper boats. Sammi has been babysitting once or twice a week. She is loving it – and the money!

Picking up our last school supplies and playing with puppets!

I am ready! The school year is planned – every day, every assignment – for both Lizzy and Sammi. Everything is bought and we are ready to start!

Back to school preparations:

Hair cuts – done

School supplies – except for teacher specific lists, done

Shoe shopping – done

Clothes shopping – done

Don’t ask me how much money!

Daddy and Joy at Cosco!

Black Light Volleyball – Sammi had so much fuN!

We got Jessi registered for Doerre, public school, middle school – ahhh!!!  Seriously, I think she’ll be fine.

Becca spent all week helping out at Kleb Middle School getting it ready for Orchestra this year.  She was in her element!  She and the director were re-taping instruments.  Making copies.  Tuning and cleaning.  In all things preparing.  Thursday and Friday the students showed up.  She helped and assigned instruments.  She LOVED it!

Becca has been having trouble with her schedule. Over the summer she worked out an arrangement with a Middle School Orchestra Director to allow her to help for one period each day.  Next semester, she will help the teacher one period and shadow with students one period as well (so two periods total).  She was thrilled!  The teacher was excited for the free labor!  But there was this pesky little detail that all schedule changes must be in by June 8th.  It’s past that deadline, well past.  We appealed to the counselor.  Quoted district policy.  We appealed to the associate principal. Sent us to the Assistant Principal. We appealed to the assistant principal.  We finally had to appeal to the principal who spoke with Becca’s orchestra director and granted her petition.    Lots of stress.  Lots of tears.  Lots of lessons on how to talk with adults/face challenges.  Lots of smiles when it was over!

They got home late after their orchestras, so the two of them ate dinner together. Becca saying she had a wonderful week, but she sure missed her Didi time!

Jessi also had Summer Orchestra.  On Thursday and Friday she went over to Doerre and got to see all of her friends and play on the school’s harp.    On Friday the orchestra went out to a movie.  Let the fun and busyness begin!

Happy Harpist Jessi!             Joy waiting for Jessi to get out of the movie – frozen yogurt helps the time go faster!        Our Middle Schooler out at a movie!

Other things these two weeks: therapy (constantly), orthodontist, activity days, 11 year old check-up (with shots – ouch), ward council, Bishop interviews,a birthday party, and six children to the dentist (no cavities (!!) but $233 in sealants).

Joy and Bella both had appointments at Texas Children’s.  Bella had pulmonology and Joy had ENT.  Bella’s doc walked in and asked when are we going to decannulate.  Like, really.  As in let’s schedule a date.  As in the child who hasn’t slept without a vent since the very beginning of 2009.  That kid?  The one who hasn’t had any sleep studies or any weaning protocols?  Yep, that one.  I started to cry and pulled myself together.  He seriously believes she can do this.  I went into stressed out handle everything mom mode and started discussing things with the doctor.  My nurse started discussing things with the doctor.  He won’t listen.  He thinks she can do it.   Fortunately for me, Joy’s ENT is also Bella’s ENT.  We spent Joy’s appointment talking a great deal about Bella!  He cautioned me that my pulmonologist tends to get a little enthusiastic.  He reminded me that this was my decision to make.  Not at all how I felt coming out of pulmonology.  I came up with a plan.  Since Dr Lungs hasn’t done any weaning protocols on Bella (believe me I looked up TONS on the internet), let’s try some on our own.  My nurses were totally on my side.  No one feels she was ready to decannulate.  (He was seriously talking about doing it immediately – the very next week.   Plug the trach and see how she does.)  I am not a “let’s run to the hospital and see if we fail” kind of mom.  I want to know how everything will play out before we think about going downtown.  After three and a half years of living with Bella, my children are so scarred, that they panic if I even mention going down town.  They were not thrilled by this news.  There were a lot of tears! 

So my plan.  Let’s start an intense weaning protocol – the doctor is happy, she is progressing towards decannulation, and I’m happy, it’s happening on my turf and under my guidance.  The first thing I did was put her on CPAP.  She completely failed the first hour.  It was so scary, but we were patient and stood by her bedside with O2 and lots of worry.  Apnea alarms, desats, the whole thing, but she rallied, and did great the rest of the night.  The rest of the week, she was on CPAP and did great.

Next came the trach trials.  Miserable failure.  We are still working on those.  Somehow we are trying to figure out how to get over the first 4 hours – those are the worst!  She is so tired and just can’t keep her sats up, so her heart rate goes up, then her breathing rate, then it all plummets again.  It’s a vicious cycle. 

But we are taking steps, and they are big steps.  We are tentatively scheduled for the end of September.  We shall see.  Bella has to show me BEFOREHAND that she is ready for this.  I am not OK with a decannulation failure.  Dr Lungs is OK with that.  I am not.  We have had enough surgeries and my other kids don’t need any unnecessary prolonged hospital stays just to satisfy a doctor.  So that is stressing me out major.

Oh, and Joy?  ENT decided with everything going on with Bella and her poor stressed out Mom, Joy’s adenoids could wait a couple of months!  :)

Later the next week…..Taking Bella out!  Let’s test her out and see how she does.  So we took her to a play place at the mall. (read germ city)  She loved it!  The girl that gets so easily overwhelmed loved it!  Go figure!

Let’s just say Joy has been in rare form these last two weeks!  Check out her blog for her latest and greatest!  We also got her into a morning program – wahoo!  Had to call and talk to a lady at the District level.  So excited about this because Joy will be able to continue her private therapies this way.

One of my biggest worries and the cause of many tears was my brother, Bob.  He was diagnosed with cancer.  A metastasized malignant melanoma.  Everything I read pretty much said one thing – death.  No, this cannot be.  The very last picture of this week’s blog shows what I was thinking about.  No.  What about his wife?  His kids?  How could I fix this?  Was there a clinical trial he could get in on?  What was to be done?  My Mom went down with him to MD Anderson.  Of course, those appointments are at the crack of dawn, so Mandy and Nathan spent the night.  We had a good time.  And, unbelievably and gratefully we were offered hope.  The doctors have a plan.  My brother shall live!  I am so very, very grateful!  Grateful isn’t even the word.  We believe he will be cured.  We bought a cake to celebrate his life!

Saturday was a very important day!  Ronnie Herrington was baptized.  I spoke on baptism and Jason confirmed him.  Becca conducted the music.  A special day indeed.

Today Becca, Sammi, Joy, Alex, and I drove up to Nacogdoches to attend church with my brother’s family.  Jeremiah was blessed by his Daddy.  Immediately after church was the baptism of Bethany.  I just watched my brother in his element today.  Bob loves his family.  He is a wonderful father and husband.  He teaches Gospel Doctrine on Sunday.  He teaches Computer Science and Institute during the week.  I watched his interactions with his ward members.  I saw tons of support for his family, so many people at the baptism.  I witnessed leaders asking him about his cancer treatments.  It was good for me to see.  Sometimes I trap other people in my mind.  By that I mean, they are frozen from the last time I saw them.  Bob is my little brother.  I still have the desire to shield and protect him – crazy as that sounds.  But what I saw today reassured me.  He is a very strong man.  He has support and love around him.  I will always pray and worry, but I feel more peaceful now after seeing him in his element.

Me holding Jeremiah, wish I had moved my hair so we could see that cute baby!  Bethany with her Daddy!  Joy eating cake after the baptism.