Thursday, April 5, 2012

{New Park, New Neuro and New Glasses}


This week a friend introduced us to the best park ever -- it's called Smith Playground and is located in Fairmount Park in Philadelphia.  This play ground is huge.  They offer such a wide variety of playground equipment for kids of all abilities.  The playground floor is solid soft rubber not mulch, which I have developed a horrible relationship with after trying to push many wheelchairs through it.  We met up with friends and had the most amazing time -- can't wait to go back.  I would love to show you photos, but we had such a great time I didn't even get the chance to take any -- not to mention pushing two chairs around.



This week I also took Jayden to meet his new Neurologist.  Crazy thing is that Jayden and Angela both shared the same neurologist but unfortunately he left the practice so now they are both seeing a new Neurologist at DuPont Children's Hospital. The appointment went very well and we left with an increase and his Keppra since he has grown lots in the past year and also a new scripts for Clonidine.



Clonidine has many purposes.  Gavin was on a high dose clonidine patch most of his life and it worked great for him.  After discussing both Jayden's difficulty with sleep and also his constant restlessness and agitation the Neuro thought it might be a good drug to try as it might address all these issues.


Jayden suffered a non-accidental brain injury.  The damage in his brain was extensive and located several places -- one of the areas with most severe damage was in his frontal lobe.  This is the part of the brain that helps with regulation.  Jayden tends to be agitated lots.  He can go from happy to thrashing in just a few seconds.  This has improved so so very much since he came home, but it's still a struggle for him.



Then there is the ever present sleep issue seen in almost every child with any type of brain injury -- the body just can't seem to get in a regular pattern.  We are hoping the Clonidine does the trick and does not give him unwanted side effects.  So far so good.


Did you notice the two little ones rockin new glasses?  So excited Jayden and Angela's new glasses finally came in the mail early this week.  I'm super happy with how they turned out and all my fears about ordering online are gone.  This site was suggested by a friend and they were so easy to use -- not to mention super inexpensive.  I purchased three pairs of glasses, the average price on them was about $25 -- this included the lenses.  What a deal, especially for the kids who will go through more pairs that I would like to imagine, particularly our little monkey boy.

I love the way they look.  I love that their personality shines though.  


Sophie said...

Madison looks so tall. She is just growing up and is such a doll.

Angela always puts a smile on my face with her smile. precious.

Hope the new med works well for Jayden, can't wait to see his face sporting those new glasses. :)

Lucy and Ethel said...

Love seeing the HAPPY faces on all three and reading about the progress!

Easter blessings -

Phyllis said...

Love seeing the three of them together and can't wait to see some more of Jayden!

JayCee said...

What an amazing family! Have a blessed Easter!!

Abbey said...

I love love love the glasses! I think I am gonna order a few more pairs for Kaden to match with different outfits. I'm kinda a dork!

Missy said...

Thanks so much for the link to the glasses!! I have bought three pairs! Cant believe how cheap they are, as I paid around $400 for MM's last pair!

Thanks so much. I read your beautiful blog all the time, I am inspired by your courage, your faith and what you are doing.

Love to you all x