First Weekend Post IVIG



 

 

 

 

How fitting that Valentine's Day was this past Friday...the first day post IVIG.  A day we show each other just how much we love one another.   We made gluten free Valentine's cookies that morning, and then Daddy called us to meet him for an impromptu lunch at Fudruckers, one of Hunter's favorite restaurants.  Of course we said yes!



 

 

 

Paige missed lunch with us, since she was in school, but she attended the Daddy Daughter dance last weekend...here are a few pics...

Paige before the Daddy Daughter dance

 

sweet hugs

going in for the kiss

 

 Later that afternoon, I took the boys outside and Hunter took interest in the T and ball.  He smacked it across the yard, and then continued to hit the balls for the next ten minutes.  Longest time he has ever played a sport!!

 

I thought things were progressing nicely, until right before dinner I noticed bumps on Hunter's arms...and then lifted his shirt to find this:

He had a rash from neck to toes.  I called the on-call neurologist who advised me either to go to the ER or call our pediatrician.  Our pedi actually had given me her cell phone number a few months ago.  I have never, ever used it...but I felt like this was a rare occasion that I could feel comfortable calling her.  She wanted me to send a picture of the rash, and said that as long as he wasn't in distress, to continue the benadryl and to go in if it got worse.  We followed up with her yesterday (Monday) because it is still very much present.  She prescribed steroids and a new antihistamine (and actually talked with Dr. G prior to our visit so she knew what to look out for) and told us that it is highly probable that it is related to the IVIG, but it could also be a viral rash.  I have read that some people can show an allergic response to a certain enzyme or even the preservatives in the IVIG.  So far, Dr. G doesn't think it will change our course of treatment.  Still makes me very nervous and so uncomfortable for him. 

 

The craziest part of this rash that is slowly shrinking with steroids and medications??

 

It is IDENTICAL to the same rash that started us on this journey.  Tiny, red bumps everywhere...right down to his fingertips.  Our doctor said it wasn't truly consistent with an allergic reaction rash, a viral rash, or a scarlet fever rash.  Wouldn't it be crazy if this "sign" was telling us his body is pushing the "old" out?

The rest of the long weekend, we kept busy to distract our minds.  We had a birthday party for Peyton's friend from his class,

treats!

 snuggle time on the couch,

 lots of hitting baseballs, bike riding, basketball shooting...

 and the highlight of the weekend...we saw Lightning and Mader!  Paige was invited to go roller skating with several of her friends in her grade on Monday, and they were parked outside the building!  I called Peter and asked him to bring the boys up...coincidentally, the cars were a fundraiser to support Autism. :)

 

 

 

 

All weekend I told myself I would not focus on looking for signs.  It is so much harder said than done, though...we just put our son through an extensive medical procedure over four days.  It is so hard not to wonder if it will work...and more inquisitively, WHEN it will work.

 

I won't say "if" it will work.  We have to believe it will.

 

In looking for signs, I didn't want to see a physical sign of the rash.  All I could think about was his body was not tolerating the infusion, and rejecting the blood product.  I did reach out to my mom's group and posted a question about rashes following IVIG.  One mom told me her daughter had a rash as well, but it was worth the rash (she has made great progress). She said the rash was just her body trying to get used to the change.

 

Paige has decided to give us other types of signs to focus on instead...all on her own...



 

Dear Hunter, I hope you are not so sad so here is why I am writing you a note.  I made you a book in Daily 5. Your Friend, Paige

 Paige had seen the sign that our friend Garrett made for Hunter, so these "mysterious" notes appeared on everyone's doors...she swore she didn't know who they were from.

Team Paige

Team Hunter



team Peyton

Team Mommy and Daddy

This is her Circle Map- she even added Lightning to the map, our dead fish.  His characteristics include, "ded"

 

Dear Hunter, I hope you did not cry and had fun when you lost a tooth. Your friend, Paige

And a surprise sticky note on Daddy's computer...made his day when he opened this at work!

 

These three goofy kids made us smile often this past weekend.  They all jumped in the crib for one last hurrah before we bid farewell to the crib that we brought our babies home to.  Sniff Sniff. :(

 



Out with the old....

...in with the new.  Here's hoping the "new" works for Hunter.