Where has this past week gone?

We are two weeks post IVIG and we are still battling the "rash." I actually received a phone call from Dr G on Friday, checking in and getting more details about the reaction.  He said after speaking with our pediatrician, it sounded like a classic drug reaction, but it didn't mean that it would have to change the course of treatment.  He told us that delaying the infusion for a week wouldn't affect the outcome of treatment, but he also didn't think it would change the result of another reaction occurring.  Although rash is not a common side effect, he couldn't promise that the next infusion wouldn't have additional reactions...so his plan is to run SoluMedrol through the IV at the start and then have the nurses closely watch him for any adverse reactions. 

 

Ugh. Scary.

 

The meds are shipping on Wednesday.  Hunter is excited to go back to the hospital- he asks us when he gets to do his IV again.  Why, oh why, are there always complications?  We have been in contact with Dr G's nurse again this week and are hoping to make our final decision soon.

 

Here are some distractions to keep our minds from going crazy:



 

Paige's last basketball game!  This little sport went from a first game with many airballs to scoring SIX baskets in her last game!

 

Coach Lindsay

 Paige's class led the news in the morning at school.  We took the whole family up to watch her production!

 The Children's Theater downtown had their first "sensory friendly" performance this past weekend.  We saw "Go Dog Go," one of the kids' favorite books.  Hunter started the show with my hands over his ears, and was independently watching and laughing along with everyone by the end.  As we left the theater, he said, "Mommy- that was a really good show!"

puppet theater outside in the lobby

 

kids found one of their other favorite characters, "Alexander," from Alexander and the Terrible,
 Horrible, No Good, Very Bad Day

 Paige got every actor and actresses' autograph and shook hands with most of them.  So fun!

 After a friend's birthday party, we stopped to get hamburgers at a local restaurant...Paige left a cute message on their communal chalk board...

 

 

Practicing a little math...this boy loves is a smart one!

 

 A little night-time basketball...all of the kids like to play now so we have been shooting hoops after dinner.

Praying for a little clarity this week.  After refilling another antihistamine script, we are hopeful we will understand the route we are to take next week.  Do we delay, cancel, or continue on with our plan? 
Hoping to have the signs and the guidance from Dr G to assist in our decision.