1-22-14 6th infusion and other things

I did Sarah's 6th infusion yesterday when she got home from school.  I left the emla cream on for an hour instead of 30 minutes. I also gave her motrin and benadryl like I usually do beforehand.  It was the higher dose that we started last time, which is 8g in 40ml of fluid.  It went very slowly as I think the tubing was having issues, so it took almost 3 hours.  But, we got it all in, and she even moved around while we were doing it.  The swelling is so much better with this infusion and she says she has no pain at all.  It was such a relief to her.  She also did not have any itching or burning this time.

She has good color in her cheeks and was feeling good with this infusion

Odo still kept her company (he is crashed out on his back).  By this time, she was tired of the whole thing because it was taking so long.

This was immediately afterwards.  It looks very good.  Today there is almost no swelling.

 

She did end up getting sick January 4.  We upped her meds and tried to keep from going on another round of antibiotics, but finally this weekend we started her on clindamycian because she is just not getting better on her own.  The antibiotic does seem to be helping, though she still is not 100% yet.  She still has a bit of a cough and a runny nose, but she can sleep at night without cough syrup now.  The infusion does not help her get over an illness she has...it just is supposed to help her not get illnesses to begin with.

Sarah also had a follow up with the eye doctor this week.  She has been wearing her glasses for a couple of weeks and definitely can see better.  And she looks adorable in them.

We also had her tested to see if she needs visual therapy, and we got those results back a couple of weeks ago.  The short answer is yes, she does need it for several areas of her vision.  We are waiting to hear when they can get her in for that.  The doctor was very happy that her vision does correct to 20/20 even in her bad eye.  She said that usually, the bad eye cannot correct to 20/20 because the brain simply won't let it happen.

The eye doctor also wanted to try her in contacts as she thinks that will help her vision as well.  She is a pro at taking them out, but really struggles to put them in, so Jason and I have been helping her.  She goes back on Tuesday to make sure they are still working out for her.  Again, her vision does correct to 20/20 in them.

These pictures of her in her contacts, and also her taking them out of her eyes.

 

 

 

 

 

Thank you for your continued prayers.  It is a huge answer to prayer that these infusions are getting easier and easier.  The other major request is that they will start to keep her from getting sick.

 

 

1-6-14 Sarah's 5th Infusion, changed dose, and more illness

Last week, everyone in the house (except Sarah and I) got sick.  Sarah finally succumbed to the illness on Friday, but instead of leading the pack, she was the last one to get it, so that says something.  Also, her fever was only around 100, which is much better than the usual 103-104.  I was still giving her the chance to get over it since she was just on antibiotics, so we just used her albuterol and phenergen with codeine cough syrup.

After having 2 weeks off school for Winter Break, Monday temperatures were sub zero and the windchill was near 30 below, so school was cancelled.  We decided to do Sarah's infusion since they were home an extra day.  The doctor had upped her dose from 6mg in 30ml of fluid to 8mg in 40ml of fluid every two weeks since she is still getting sick.

The good news is that this infusion also went very well.  She has the normal swelling, but very little pain and soreness.  I definitely think that moving the location of the infusion sites makes the difference.  So we are going to try this dose for a bit and see if we see improvement.

We also had an appointment last week with the pediatric ophthalmologist along with her assessment to see if she needs visual therapy.  We got her glasses ordered, which we hopefully will have next week, and we should get her scores and recommendation if she needs visual therapy this week.

Her next infusion will probably be 1/20/14.