2-5-14 7th Infusion and other updates

On Monday, I had to take Sarah to get her labs drawn to see if and how the infusions are affecting her (hopefully for the better).  We should have the results back next week, and I am so curious to see what they show.

Tuesday, Sarah had her first visual therapy (VT) appointment. Her appointments are 330-430 on Tuesdays.  In watching her therapy, it was very apparent that she needs to do this.  Fortunately, we are blessed that one of Zach's teammates will take him to soccer on Tuesdays so we can keep her appointments.  And since she has early release about twice a month, I should only have to pull her out of school early about twice a month.  Then she also has 30 minutes of homework a night to help her progress.  It doesn't sound like much, but it is actually difficult and tiring for her.  Here is one of her activities from yesterday.

Yesterday was Sarah's 7th infusion.  Because the last two were messed up, I talked to the home health company and explained that I thought the tubing was having issues.  We use different tubing every infusion, but this batch seemed like it was a lot thinner than the other ones.  The pharmacist did some research and sent me new tubing from a different manufacturer.  This tubing seems to be a lot thicker, and we were back down to a 2 hour infusion time again.  And it went in equally in both sites.  I am very happy because I was getting frustrated with the other, as was Sarah.  Sarah is so brave, and really doesn't get nervous about having to do this any more. Giving her the Benadryl and motrin really helps her not have a reaction to it.

This picture is the infusion sites immediately following.  She did get up and move around, and even sat at the table to eat dinner while she was having it done.

These next two pictures are only about an hour later.

 

 

The swelling is really good, and she is just slightly sore.  But she still has been horsing around with her brothers and sister today, so she is feeling good. 

Sarah just finished her round of clindamycian, but she is starting with a runny nose again.  She also had a bit of a temperature (around 100) on Tuesday night and Wednesday, but it seems to be gone today.  They have had 3 snow days this week, so Sarah has had some time to recover and will go back to school tomorrow.  Her next infusion will probably be on Wednesday, February 19th.

Sarah is getting frustrated with all of the stuff she has going on right now, and I know she would appreciate your prayers.  She says "Why does everything happen to me?  And why do I need so many therapies?  Speech therapy, immunoglobulin therapy, and vision therapy."  That is a lot for a 7 year old, I think.  But she is so good about all of it, and overall has a good attitude.  She is looking forward to starting soccer again next month too!