The in-between chemo week

Where were you at 4:00 AM Saturday morning?  This is where we were:

Just a bit of a scare.   As much as we tried to prevent it, Mikey and I both caught that awful cold that has been going around our family (as well as like the whole world, I hear).  On Thursday, we had a check-up in Denver where they thought everything was fine.  But that night, our nurse called to let me know that Michael's blood counts were extremely low and we needed to be ultra careful with him.  Any fever above 101 he needed to be seen at the hospital.  The reason for this is because chemotherapy had essentially killed Michael's immune system making him unable to handle any bacterial infection.  If he got one, it could ravage his body in just a matter of hours.  Sure enough, at 2AM he was running a fever of 101 and so off we went, expecting we would be staying for about 2 days to treat him for an infection and watch his blood counts.  But after another blood draw in the ER and some waiting, great news arrived that his blood counts had bounced back significantly since Thursday morning.  He was out of the critical zone and could fight an infection on his own so we got to go home!  We were so relieved.

And then we came home to a house that looked like this:

Anyone else having it rough?

It's so hard to be sick and taking care of sick kids, some of them very sick.  Is it any wonder why this blog gets ignored now we are at home?  Thankfully, we rolled up our sleeves and got most of it cleaned up Saturday.

We have been patching Michael's eye this week. 

The patching is not necessarily to strengthen his right eye, but actually to make sure that the brain is getting sensory information from it.  Here's a bit of the technical explanation:  Michael's tumor grew in the way of two of the cranial nerves, one that serves eye sight and one that serves eye movement, blinking, tear secretions, facial movement, tongue movement and throat movement.  Our neurosurgeon had to be quite aggressive removing the tumor around those nerves.  He didn't think he cut the nerves, which would render them permanently useless, but he knew he damaged them and has hoped that given Michael is a baby, they would regenerate.  Hence the hoping and waiting for those abilities to come back.  Our eye doctor could see that Michael's right eye was "seeing" sometimes, but not all the time.  The brain learns so much in the first year from all the sensory information a baby receives and his biggest concern was that the brain would begin to ignore the right eye because it was only giving partial data.   Instead the brain would only accept data from the left eye which was working fine.  Even if Michael's nerves completely healed, if the brain shut off reading information from that eye, it wouldn't matter.  There is no way to get the brain to turn back on it's ability to read from those nerves.  So we patch his good eye so that the brain is getting something from that right eye for 2 hours of the day and hopefully won't begin to ignore it while those nerves heal.

And good news is that he cried tears out of his right eye today, which is a first since surgery (he's been really good at crying big tears down his left cheek but not his right).  So everyday, we see little bits of progress.

Life has marched on in so many ways as it does with young kids.

This is when Aunt Carrie was here and the kids were making their Valentines.  Mikey was eating a valentine balloon string.

One of my favorite pics of Whitney.  She starts Kindergarten in the fall.  Our physical therapist for Michael noticed her challenges with coordination and low tone and suggested some things that can help her at this age - tumbling, swimming, and a trampoline.  I feel so blessed with this therapist's comments as we have wondered for years if Whitney needed some therapy.  After all, she didn't walk until 20 months... and in some ways I just wished I would have known sooner 

I am so glad we kept the Bumbo we borrowed from friends.  We use it a lot to help him learn to control his neck and shoulders again.

 

 

Sarah (on the left) talked Whitney into playing "getting married."  I love their creative costumes.  Whitney in too-small pj's with Spencer's Sunday clothes, Sarah with a skirt draped over her shoulders.  And yes, Whitney, who is almost 2 years younger, is now taller than Sarah

Still working on healing those scabs on Spencer's face... Our nightly ritual right now is duct taping over a bandaid on his forhead, then duct tape gloves to his jammies so he can't take them off (thumbs left free of course so we can get some sleep).  We are so close we think we only need this for one more night...

He is a cute kid and has so much energy

The girls love playing "swimming pool" with their polly pockets.  Michael's ophthamologist also would like to look further into Sarah's nystagmus (involuntary eye movements).  I am grateful for Michael's specialists who are helping our whole family it seems.

This week is another chemo week so long as Michael is over his cold enough to handle it.  He is pretty sick so we will see by Tuesday what happens.