Wednesday, August 15, 2012

Time flies...

Sorry we have not been keeping this updated. Jason and I have been talking for months about how we need to post some updates on our family situation. I guess because things are going so well we haven't really taken a moment to tell everyone how we are doing. It also made be just a lack of time. He has been busy since it is fire season (and he is a fire fighter with the US Forest Service) and I am back working full time and taking care of the kids.  I spend a lot of time on the computer at work so getting back on it when I get home is very unappealing.  I guess that is why it has taken me so long to finally write an update.

As expected the whole situation with Ruby really put my life into perspective. It made all of the things that used to seem so major, now are very inconsequential.  It also made me take time out for the important things in my life. I appreciate things more even the simple things like one day with no illness or nice weather. I pray a lot more and not so much asking for things but just thanking God for all of the blessings in my life. I try not to ask for too much these days. I feel like I have asked for a lot this past year and now I am trying to spend time just being thankful for what I have.

Ruby is doing amazing. She's running around and playing with her brother as if nothing ever happened. She is as feisty as ever and brave trying new things.

She is speaking a lot and putting together more complex phrases and thoughts. She seems to be catching up with her verbal skills but to me, seems to still have a difficulty with the concept of past, present, and future.  I am not sure if this is just normal development or if there is some delay because of her surgery and stroke.
I worked in preschools for a long time and there were children Ruby's age who could not speak as well as she can and they were developing normally. But I also see many children who are her age who have much more complex thinking than she does and who also can talk much better as well.  It is so complicated and there are a lot of unknowns.  But we are just taking one day at a time and working with her every way we know how.  Like everything with her, there are a lot of questions with no answers. There is no way to predict what comes next.
We have had a fun summer.  When the weather isn't too hot we try to spend a lot of time outside playing in the back yard.  We have a great little swing set and the kids really enjoy it, especially Ruby.  Oliver spends most of his time outside exploring and trying to figure out how everything works.  He could care less about sitting in a swing, where as Ruby would sit in it all day if I'd let her. 
The kids also participated in the county's Youth Track Meet in June.  Once again Ruby ran with lots of enthusiasm.  She seems to really get a kick out of it.  Not half as much as I do.
Oliver saw a big pile of branches and brush at the far end of the field and thought it would be more fun to go check that out.  He didn't get a ribbon but he sure seemed to have fun.
Ruby starts preschool in September, which I am very excited about. She is going to get speech therapy and also some special education services. We aren't really sure what she will need and how much special attention she will need until she has been there for a little while. I am excited for her to try preschool. I don't really know what to expect or how well she will take the transition but I am hopeful. Luckily the preschool is right next to where she has her physical therapy so it will be very convenient for our family and she will be able to continue her physical and occupational therapy.
Once Ruby starts school I think we will be able to get a better idea of where she is developmentally. All of the assessments that have been done are not a good judge of where she is because she does not perform well when someone is at our house asking her to do specific things. I am hoping that with a little more specialized help and more assessments we will have a better understanding of where she is and different ways we can help her if necessary.

Ruby got a new pair of braces this summer.  She is doing great in them.  They are hinged in the back, which allow her to bend her ancle.  Before this, she was quite limited in how she could walk and run.  She has gained a lot of confidence in her abilities to run and jump off of stuff.  It kind of freaks me out sometimes.  You can see her jumping off her steps in the video on the top of the page.
I want to thank all of you again who have supported our family.  If it hadn't been for the donations made to our family we would be under a whole different level of stress.  Taking the financial burden off our shoulders made a huge difference for us.  For instance, our share of these braces she got this summer was $900.  Her feet are growing so quickly that it is likely she will outgrow them in a few months.  Her last ones lasted six months.  I am budgeting that we will have to get new ones every six months or less.  But thankfully we still have some money left from the donations and so we don't have to worry about the cost, and get to rejoice in all the benefits.  It makes a big difference when we can look at her braces with excitement instead of dred.  Thank you again so much.
I am truely blessed to have two wonderful children.  They are learning to play together more and more.  Oliver is starting to talk as well and it has been fun hearing him learn new words and be able to communicate with us a little better.  I love these two little ones and look forward to all the adventures we have in store. Thank you again for all of your love and support.  I will try to update this as Ruby begins school.  I hope you had a great summer. All my love - Sarah

Ruby and Jason on Father's Day at the Columbia Airport Father's Day Fly In. 
Ruby loves airplanes so she was very excited.