Cute Video

Happy Turkey Day!

I can’t believe I haven’t blogged in two months!!  I guess things have been busy.  We have moved into our new house and we are really enjoying the extra space and getting settled in.  Peyton has adjusted well to all the changes. 

She has had an eventful few months.  It started off with a UTI that made her pretty miserable for about 3 or 4 weeks, then she decided that holding her pee was a good idea since it was painful to go when she had her UTI.  She did this for another couple of weeks and seems ok on that front now.  On the tail end of the UTI, she caught a cold which developed into Pneumonia.  That was caught really early so no hospitalization, thank goodness.  It has taken her weeks to even start to get back to normal and she has been very very very grumpy.  In the midst of all this, we also added another seizure med called Onfi and after we weaned her onto that, we began the wean down of Phenobarbital.  We are half way thru and besides some extra seizures, she is tolerating the wean well.  We are seeing more alertness from her and that is always great. 

Her Physical Therapy and Occupational Therapy are going well and she is scooting right along.  Progress is very slow, but she does make progress.  We have the best therapists – they teach us so much and have the best ideas.  No matter how down I feel about Peyton’s progress, just being there for one session with them and I feel so much more positive and optimistic.  They are rays of sunshine in our weeks many times.  I don’t get to be there much for the sessions since I am usually at work, but I always get a play by play after they leave and it’s quite the highlight of my day!  We are going to start Speech Therapy next month.  This will help Peyton hopefully learn some communication skills and also help her with her swallowing.  There is a fear that her pneumonia could be a result of silent aspiration so the Therapist has recommended she have a swallow study done to see if that is what is going on.  In the meantime, we are using different techniques to help her when she eats.  The ketogenic diet makes it difficult sometimes, but we can usually find a work-a-round. 

Oh yeah, Peyton turned TWO in October.  It was a low key birthday since she was so under the weather and we didn’t even have a party.  To be honest, birthdays can be difficult.  It’s easy to look at her and think about what she can’t do and what all the other two year olds can do.  We have to shake this off and celebrate Peyton and who she is and what she means to our family.

Happy Thanksgiving everyone!!!  I hope everyone gets to spend the day with family or friends and remember how much we all have to be thankful for.  Posting a few pics of the blessings in my life.  

 Hanging out with big brother

 Watching some tv with her brother and sister

 Puzzle Time with her OT:-)

Ducky

Me and one of my biggest blessings in life:-)