Sunday, June 12, 2011

Back for real this time!!!!

I apologize for not actually getting back on and updating.  We got internet and our computer promptly crashed.  It was unfixable. 
It's been a LOOOOOONG week.  Alot has happened and I'm not even sure where to start.
We have been interviewing, orientating and training nurses.  This has been such a long exhausting process for all of us.  We MAY be at the point where we have a good staff but unfortunately it's to early to tell.  When finding nursing there are so many things to consider.  Are they in general a good nurse?  Are they a good pediatric nurse?  Are they a good personality fit for Eli, us, and the kids?  How are they with schedules and flexibility?  It's just way harder than good nurse, done. 
Eli has also been getting situated with therapy.  He is going to physical, occupational and speech therapy at a center based therapy group.  We are really impressed with them so far and are happy with their current goals for him.  He will also have inhome based therapy, mostly focusing on communication.  The goal is to get Eli an ipad going and to begin working on a PECS based communication as well as still presenting him with alot of signing opportunities.  Eli tried a pair of shoes this last week and his feet immediately buckled them out.  His PT wants him in a good high top shoe and his doctor has send the orders over for AFO's.  His OT is working on alot of sensory things and trying to introduce him to a wide range of different textures.
He also had an appt with his pediatrician/medical complex doctor.  We love him and think he's a great doc for Eli.  We all met for almost 3 hours.  We went thru each and every system and doc and discussed where we were with each and what we needed next from each.  He is getting Eli into an eye doctor up here to get his glasses fixed and get his eyes re-checked to make sure his script is still good.  He is also getting him into the car seat clinic to get him fitted into a special car seat to put him in a better position for breathing while in the car.  He's getting in touch with the pulmonologist to get O2 added to his CPAP so we won't have to keep switching back and forth between the 2 at night when he drops.  He also agrees with the neurologist about Eli being functionally deaf.  He agrees with getting him into the Kansas school for the deaf and pushing forward with the ipad and signing.  We went thru all of Eli's equipment and all of the supplies that we have and all that we still need.  We also discussed Eli's struggle with the heat and hydration and with his decrease in urine.  He has a call into the urologist and is considering getting Eli into an endocrinologist. 
Eli also met with his cardiologist this week.  His cardio is going to go back and look at each ECHO and try to determine if the leason is in fact growing or if it's simply measured from a different angle or what not.  We will wait to hear back from him soon.
Eli started running a fever yesterday morning which of course brought on the high heart rate.  He still has both today but no other symptoms.  We are hoping that it doesn't turn into anything more.  He got to go out for a bit yesterday afternoon and today.  He enjoyed being outside and getting to watch people around him.

My parents and Eli's nurse from Wichita, Paula, came up to visit for the weekend.  We celebrated Ben's 6th birthday.  Saturday we went to Legends and had lunch at T-Rex.  This is one of the coolest restaurants and the kids absolutely love it there!  We had a great time visiting with everyone and Eli was beyond happy to have his paula paula for a few days!

The last piece of news is in regards to Bob's job.  His employer had been working to team up with another company and launch their partnership.  So bob and many other people were hired for this launch.  It didn't happen, and didn't happen.  So many delays.  On Friday a group of them got laid off...bob's group was one that did in fact get laid off.  We are confident that he will find another job quickly but it doesn't change the fact that we definitely weren't expecting this massive bump in the road.
Like always we will simply stick together as a family and get thru all of it. 
Alot of things going on right now, some that I can't mention right yet, but we definitely could use any and all prayers and positive thoughts possible!

Here are a few pictures from this past weekend.
The 7th of us

The 7 of us plus my parents and paula!

Paula and Eli

My dad and the oldest 2 boys

My beautiful Emily

My incredibly goofy Jace

My ridiculously adorable birthday boy Ben

my tom boy princess ari

My super big smiling tiny man

1 comment:

Kenzi said...

I looooove the picture of Eli and Paula & the last pic of Eli! Precious!!