Too Tired To Title:)

So I wish I was better at this whole blogging thing.  I don't know where the time goes!  But here we are again.  I guarantee that I will have some grammatical errors tonight, I am a little tired, but really want to update you!

He sat in this position for like 5 minutes.

**There is a video I am trying to download and it isn't working.  But I'm tired.  I will try next time:)

Patrick has been doing well and has been a busy little guy.  He had a follow up kidney ultrasound last week which showed some mild dilation, which he has had all along, so they just monitor his blood pressure and urine.  He went for a physical therapy evaluation in Ann Arbor and they let him try out a few gait trainers, which are little devices to help him learn to walk.  They are like little walkers on wheels.  He tried one in Virginia and wasn't too excited about it.  But the one he was in last week, he loved!!!  He actually moved it a little bit on his own.  I was very happy with how well he did, considering he hasn't been in a stander much since we moved or putting weight on his legs as much.  We are going to try one more next time and then we will order one, which I am soooo excited about!!  We are also trying to decide on bath chairs as well.  It's a busy, busy time.  He gets fitted for ankle braces next week, tomorrow we are going on a field trip with his school, then we have to do another IEP before we move(which will hopefully be done by March 15).  I still don't want to jinx the house, so I will keep you posted.

This is Jameson watching Beyonce during the Super Bowl

And here he is trying to steal Avery's book.

 It's so frustrating when these kiddos just can't tell you what's bothering them.  Partrick had one of those days today.  Something was bothering him and he just couldn't tell me what it was.  I tried everything....but he just wasn't happy about something.   I knew he wasn't in pain, just annoyed by something.  He eventually settled down, but these are moments that are just frustrating.  He can't just say, I am cold or hot or hungry or maybe I just want to be left alone.  We think we have him pretty much figured out, but sometimes, we just don't know.   I have had a few days lately where I just feel sad(which happens every once in a while).  The other day while his occupational therapist was here, he was just having a hard time with something as simple as holding a toy.  He was struggling and just getting frustrated because he couldn't do it or didn't want to do it.  But either way, it's frustrating to watch sometimes.  Especially when I look over at Jameson and he can pick stuff up without even blinking. Now mind you, we feel lucky that Patrick is where he is, but to think about how hard any child has to work to do these simple tasks, can sometimes bring these moments.  After these therapy sessions, when him and I are both frustrated, are the best times to just cuddle on the floor with him, just so he knows its ok.  I don't know who it benefits more....me or him?:)  But after the cuddling, we just keep trying!!

One of Patricks PKS friends, Simon, is in the hospital, so keep him and his family in your thoughts and prayers!  They are just trying to figure out his seizure activity and he is just not himself:(. Hopefully he will be home soon!