Saturday, May 19, 2012

Dear John Paul,

It's almost 3:30 in the morning and I have been up with you for almost an hour.  Yesterday you met your eye therapist through the county Infants and Toddlers program.   She was great and had all sorts of great suggestions for fun things for you to look at.  I gave you your massage in the afternoon and we got to snuggle during your afternoon meal.  After dinner, I went to bed with so I could get up early and dad and aunt Suzy gave you a bath and did trach care.

You have been going through trach suction catheters like crazy this month!  We have an allowance of 300 per month and we ran out out of those a long time ago.   I bought 150 online and we are down to our last 15 of those so we are having to reuse them to get us to Monday when more are coming...and even those are being delivered a little early. 

Even though you have been so congested in the last couple of weeks, you have been doing great...satting well and having great alert time.

The last few days have been very busy with training new nurses and trying to coordinate various doctors to get appointments and orders for your splints, a Kid Kart (handicap stroller), begging for more catheters, transition to Model Waiver, etc....I'm looking forward to having some of the administrative craziness to slow down so that I can focus more on trying to do more fun things with you. 

Earlier this week you had a great visit from Nanny and Pop-pop Aronne.  You and Pop-pop had a nice long talk, hanging out on the floor.  We have had several beautiful days and you did have a lovely patio dinner the other day.  I'm hoping to have some more outdoor time with you this weekend. 

Love you so,

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