Tuesday, September 6, 2011

playing catch up

Behind like always.  We went out of town for the holiday weekend.  We were gone thursday afternoon until monday afternoon.  It was nice to get away for a few days.  I got to go to my knitting group and hang out with everyone.  We got to do some shopping and spent time with the kiddos.  Bob and I got to go on a date night and really enjoyed the time alone.  We got to visit with some friends and really enjoyed reconnecting with everyone. 
We took it easy monday evening and hit the ground running this morning.  Little man woke up and his nurse was disconnecting him from his feed, when she called me over.  Eli's GJ tube had broken.  I immediately called IR and we had to head up to the hospital.  They replaced it and said that they had multiple tubes break in the same place lately.  I immediately went from the hospital to Ben's IEP meeting.  We agreed to a month long IEP while they get his re-evaluation finished up.  We are also going to work towards getting a full health plan in place.  I was able to come home for a bit then it was back out again.  Ari had her in school evaluation.  We met with the main child development worker, speech pathologist and occupational therapist.  She will have her in home meeting with all of them on thursday and then we will have the full assessment meeting at the end of the month.  Ari is really hoping to be able to start PreK soon.  Then it was back home and a touch of down time before picking up the kiddos from school.  Then Eli's ASL tutor came.  She normally comes on Tuesday morning but since we had to go to the hospital she was able to change to this afternoon.  Today we learned some more basic communication signs, as well as our days of the week, and how to sign the ABC's song!  Eli is really enjoy the ABC's song.
On top of all of this I have a sick husband.  He seems to have caught my cold and is coughing so much he is light headed and simply not feeling well.  Fun times.

Today on facebook it gave me the whole 1 year ago today post.  Wow.  I year ago today Eli was in the PICU with his 1st round of pertussis.  We had learned to suction and use O2 at high levels, we had learned advanced life support and how to keep him always positioned upright, keep his airway open, and how to use an ambu bag.  1 year ago today we went and picked up Ambu bags for his bedroom and the play area in our home.  1 year later Eli still has an ambu bag hanging next to an O2 tank in each room he is in primarily.  It's such a strange thought to think about this.  It's something you never expect to see in your home.  Heck it's something that most see in a hospital and don't even realize that they see it.  Yet here it sits right next to his push toy and bookshelf.  I have those moments where it just hits me that this really is my life, and today was again one of those moments. 
More in the next day or two.  Promise.

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