Monday, February 2, 2015

Cathy's 1860s dress and more

Cathy had a fitting of her bodice today...in between everything else!

I stayed with Ben today and realized I had my camera with me.  So, I remembered the neat little sewing machine her dear husband gave her and took a couple pictures:




BEN UPDATE
Ben did have a severe headache Saturday evening.  That is one of the side effects.  It is part of not being hydrated enough.  When he was on the IV they were hydrating him too.  He wasn't drinking enough once he was off the IV.  I made sure he was drinking today!  We keep noticing that he is more "with it" and responds quickly when asked a question.  Usually, you had to work to get through the zoning to get him to hear the question, then you had to wait and wait for the answer.

For the majority of parents, these little things are so insignificant but for a PANDAS child just the littlest improvement is huge!  We will be watching for all those little improvements with joy at each one.  Each one gives us hope Ben will make huge strides by the time these treatments are done.

Often there are big improvements after the first treatment, then after several months the improvement slows down and then another treatment is given.  3 or 4 treatments can be given.

Friday, January 30, 2015

BEN UPDATE

BEN UPDATE:  Today was the last day of the IVIG.  Ben was really alert and calm, no real PANDAS symptoms.  And his voice seems to be stronger and clearer.  There is no pause to process a question, he just pops out with the answer!  No zoning!  Now there will be some days of watching for side effects, nausea, vomiting, violent headaches, joint aches and pains.  They figure 4 days to watch for these effects.  So far none.

I left around 3pm, went home and slept for 3 hours.

The real highlight for the day was when I walked in his room and he said, bright and cheery, "Hi, Grandma!"  That was a gift!  Usually he is zoned out and doesn't even give you a hint he knows you are there.  

It is hard to acknowledge hope that this is turning to bring him back to us.

Thursday, January 29, 2015

BEN UPDATE

BEN UPDATE

Ben had a good night and is on the first bag of IV this morning.  Cathy and I both think he is more "with it" than usual.  Part of me is afraid to really hope, for fear of disappointment.

Day 2 went well and no side effects showing up so far!

Still afraid to have too much hope.





Wednesday, January 28, 2015

PAT'S PATTERN COLLECTION - Blouses, day dress, skirts, cape

Pat's Pattern Collection - Blouses
















































































































































MY PATTERN COLLECTION - Hats and Men's Outfits




I have another hat pattern I need to scan too !











More will be coming!



































Ben Update!

BEN UPDATE

Ben has been on IV since 10 am and this afternoon the IG part of IVIG was started.  So far he has been great.  No pain, no side effects showing up so far and good nurses.  The church members dropped by with dinner and I am off to pick up Luke!




UPDATED UPDATE
It was a long day for us but the worry and anxiety was what made it hard.  So far, so good.   And no raging which is what happens to some PANDAS children's reaction to the medicine in the IV.   We have experienced the raging a year ago to a reaction to a medication for anxiety.  It was painfully terrible for all, and very scary.

The IVIG will go on tonight till about 11pm.  Then it starts again in the morning.  I am just so thankful it has gone so well to this point!  He was even so more "with it" than usual after a few hours in.

MY PATTERN COLLECTION - Skirts























































I need to rescan the cover of TV290 again!