Wednesday, August 24, 2011

No News is Fun News

Well, it's been quite a while since I have updated here.  Luckily things have been going well overall.  The end of July we spent some family time in California and then the second weekend in August, we spent some time at the Ryan House in Phoenix.  Both trips were fantastic.  I have been working on blogging the full story of both trips on our family website, but here are a few fun pictures.  If you want the whole, long story you can visit  Hopefully soon I will get all the pictures up there.

Bryce loved everything about the ocean from the first moment. 

Bryce and Jacob resting on the beach. 

Annalise warmed up to the water once she saw her brothers having fun in it.  She wasn't so sure at first. 

On the pier at Seal Beach.  Bryce was too busy looking at everything around him.  Couldn't stop to look at the camera. 

The Ryan House was amazing!  There were many wonderful people there who enjoyed playing with our children and making sure they had a fun time while Mom and Dad got some much needed rest.  We are already looking forward to our next visit! 
Spencer sporting the treasures he found in the dress up box.  All three of the older boys enjoyed dressing up...especially in the pretty pink clothes that they had.  Lots of fun stuff that we just don't have around our house. 

Annalise sharing a pop tart with Dad in the amazing Kitchen.  I fell in love with the kitchen here. 

Bryce with Kasha, one of our favorite people at Ryan House! 

One of the therapy dogs that visit while we were there. 

Jacob and William trying out the helicopters they made in the art room.  They are standing on the top of the wheelchair accessible play structure in the court yard.

Annalise LOVED this little car!  It was a great way to get her around the place.

Those were both good trips that will provide us with lots of great memories.  Once we got back from Ryan house, real life began again.  The boys are all back in school now. =(  Bryce, as usual, is loving school.  His teachers, aids, and therapists are all so amazing.  He is in the same preschool class as he has been the past year and a half.  I can't believe he will be starting Kindergarten next year and Annalise will be going to this same preschool!  

Last week Annalise had an appointment at the wheelchair clinic and one with a developmental pediatrician.  We were able to order a stroller type chair for Annalise that should be here within a few months.  Hopefully her walker will come this week.  She is still walking some, with help, but it continues to get harder for her.  Hopefully the walker will arrive while she is still able to use it!  Her favorite phrase right now it, "kick the ball".  She often wants to walk around the house while holding my thumbs (she has her own, exact way of doing this), while "kicking" a ball.  I need to get someone to video her doing it.  She has also gone to a little frog hop in order to get around.  She doesn't really crawl anymore.  Her upper body strength is just not enough.  She just moves her arms forward and hops her backside up.  What is cute, is that she has started saying, "ribbit" as she hops. I guess because people always say it looks like a frog hopping.  It is super cute although sad at the same time.  

She is beginning to really struggle with feeding herself as well.  I have ordered some adaptive dishes, silverware, and cups that will hopefully make it a little easier for her.  She will work at it for a while and then say, "Mommy's turn" and hand the fork or spoon to me.  She always wants to at least try on her own first though.  We have to watch her really closely too since she has begun choking on some items.  Water is the worst right now.  We will need to start thickening her liquids soon I'm guessing.  She continues to talk up a storm.  She is babbling most all the time.  Sometimes we can understand her and sometimes we just listen and answer as best we can.  She has learned quite a few signs that come in very handy.  She is so much fun to be around!  She has quite the little sense of humor.  The boys just love her to pieces!

Bryce has been doing really well over the last few months.  He has remained pretty stable, which in the case of Leukodysrophy, is a great thing!  We are currently waiting for a new seat shell for his power wheelchair.  Unfortunately it is unusable the way it is right now.  It is also a bit too hot right now to be outside working with him in it, so I think once it gets cooler and we get the seat, we will begin again.  

Bryce had an appointment today at the spasticity clinic.  They are going to keep his meds the same for now.  They are talking about doing Botox in his arms to help with that, but I have read/heard that botox can be very dangerous in children with AGS, so the doctors are going to do some research first.  I'll be doing a bit of my own in the mean time!

When I was loading Bryce into the van today, I saw Dr. Narayanan coming down the stairs of the building.  He came over to the car and talked with us for a while.  He asked how the kids were doing and said that he hasn't heard from Dr. Crow yet.  He said that he will email him this afternoon and see what he can find out.  Hopefully we will hear something soon.  

Sunday, August 14, 2011

The Ryan House

We are enjoying a wonderful, restful, weekend away at the Ryan House.  This is our first visit and we are so thankful for all of the staff and the many, many volunteers that make it possible for our family to enjoy a weekend away full of respite and fun.  Pictures of our California trip and our Ryan House weekend will be coming soon.