11-17-2014 Vision Update

This morning, Sarah had her 3 month follow up after her completion of visual therapy.  This visit was to make sure everything "held" and her eyes were not reverting back to the way they were before.  (Sarah had been throwing up yesterday afternoon and even had a little fever last night, so I was worried that we would have to move the appointment.  Her eye doctor is only in that office Monday and half a day Tuesday, so it potentially could be difficult to get back into her if we needed to move the appointment. Fortunately she hasn't gotten sick since 6pm last night and seems to be totally fine today.  Glad this bug was short-lived!)

If you missed the back-story on Sarah's eyes and visual therapy road, you can find it here:
http://sarahsjourneytowellness.blogspot.com/2014/08/8-14-14-visual-therapy-graduation-and.html

After doing all of her exams, the eye doctor informed us that Sarah's eyes are doing great.  She is solidly seeing 20/20 with correction (which she didn't even come close in the beginning, and even though she did at our last exam in August, she could just fluidly call out the letters today instead of having to work harder to make them out), her recoveries are great, her eyes are working together, and she doesn't anticipate us having any issues at all in the future.  She has now officially been graduated out of the visual therapy program and released to go back to our other eye doctor.  She technically is due next month for her eye exam, but because we have gone through all of this, she suggested waiting 6 months as we already know her eyes are doing great and we have the correct prescription (her RX didn't change from last December to now in terms of what she needs for lenses).  Sarah will be glad to get contacts again.  She ran out of them, and I was waiting to see if she needed a different RX before ordering another box.

11-13-14 Sarah's 27th Infusion

This week we had infusion party Thursday as Wednesday was crazy and they just didn't get done.  The infusions are still going well, and Sarah is still staying healthy.  I am so thankful these treatments are working and keeping my kiddos healthy.

Two of the Mom's on my Zebra board (kids with PID are called "Zebras") made an amazing video to raise awareness.  My 3 zebras are in it as well.  They did an outstanding job.  Please take a minute (or 8) to watch the video.

https://www.youtube.com/watch?v=qT8ecqF63Ck

10-29-14 Sarah's 26th Infusion

October was a busy month.  It was the end of fall soccer (so Sarah is done until March), we celebrated Anna's 4th birthday, and the kids were out of school for conferences so we took a few days to go to Denver and visit my Grandma who is 91 and the rest of my family out there.

I will share pictures from these at the end.  Sarah had her 26th infusion on Wednesday, October 29th.  The doctor's office has decided to start providing the kids' infusion supplies instead of going through the home health company that we were using.  There was a delay in getting things switched over, so her dose on the 29th was only 8 grams instead of the 12 grams she usually receives.  I am still waiting to see if she will be okay by next Wednesday when she gets her next infusion because of the lower dose.   So far, so good.  Since she was only getting 8 grams last week, we clamped off one of the needle sites so she got it in two sites instead of 3.

While we were in Colorado, the kids got to ride horses and ATVs with my husband's cousin's family.  They had so much fun.  I took my 5 year old nephew with us too.

All of us ready to go

 

 

At the Colorado Boarder

 



Riding Horses

And the ATV

Infusion Pics from this month

We took fall pictures in Colorado this year for a change of scenery

Halloween pictures.  My Mom couldn't find an Anna dress for Sarah in her size, so she made her a wonderful costume, and Sarah loved it.

 

 

 

Sarah and her best friend Jackson