Week 47

This was a tough week for us with everyone being sick. Ryan was still sick most of the week. We kept both Ryan and Julia home on Monday and tried to send them in on Tuesday.  Half way through the day their daycare called to tell us that Julia was now sick and Dawn went to bring her home.  When I went to pick up Ryan later that afternoon he was standing on one of the outside play ground pieces and asked me "if he could go home now".  Normally we have to drag him off the playground but he looked so sick just standing there we kept him home the next two days.  It was a total team effort between Nonna and Grandma coming down and watching both of them the rest of the week. On Friday Ryan was well enough to go to school but Julia was still sick and went up to Nonna and Papa's house. Everyone is starting to get better but it was a long illness! 

This week we were supposed to drive up to Dr. Bock on Tuesday. However, with everyone still being sick this was not a possibility. So we set up a phone appointment.  Dr. Bock was pleased with Ryan's progress and was glad that he did well on the trip to Pittsburgh and Florida. He is going to write us a letter in support of Ryan on the GF/CF diet so we can add it to his IEP at his annual review this May. He also put Ryan on a new supplement called Phosphatidylcholine concentrate.  This is to help with developing and repairing neurons in the brain and to help with the break down of fatty acids.  He is still unsure as to why Ryan's eczema comes back so he is going to send us back for more blood work to look at fatty acid levels, vitamin D, iron, and minerals. 

The kids seem to be back to their old selves again.  Here they are dancing together...

We did not mention in last week's blog that we registered Ryan for Kindergarten! However, you would think that this would be an easy thing but of course it does come with it's transportation dilemma. The form for requesting transportation is due by April 1st. However, Ryan's annual review is not until the end of May. We will not know if Ryan is in morning, afternoon, or in the all day special education kindergarten (yes, our school district still has half day) until the middle of August. Our school district's response is to fill out the form letting them know where to pick him up and drop him off for all three scenario's.  However, how can we go to a day care facility and ask them for a spot if we do not know what we need? While I am sure that the transportation will work out it just causes us unnecessary stress and this always seems to be the one area that we get the biggest headaches with when dealing with Ryan and his programs.

Ryan came home with a clay dinosaur that he made at PARC.  He was quite proud of his creation!

PC