Snow Day Update

This is a recent email I sent adding to the post below:

Just an update on the boys.  I did not send one after Sam and I got home from the hospital and testing, but I have not updated my blog since that last post about him either.  Thanks to those who pray for them and ask about them!

This is a pretty much a repeat for those who read my blog, so sorry!  The EEG was good.  No signs of seizures.  He did so well.  They did not need anyone to help get him hooked up, and he actually talked and joked a little bit with the tech.  She told him that she would give him a blue bandana to cover his head and a green backpack for his cords.  She asked if that was okay.  He said, “Yes.  I love green backpacks.  My mom always gets me blue.”  That tickled her.

Cindy went with us and had to make a few trips to the car to bring in all of the fun people sent for him/us.  He had puzzles, games, books, Playmobil, and Legos, among a lot of other goodies.  Thank you to all who sent those with snacks and things to keep us busy.  He could order movies from a huge list.  They brought in a Wii with loaded games that he played and played and played.  He was so good and was never bored.  Since he was on the neuro part, he received a Joy Jar when we checked in (the organization started by a little girl who died of a brain tumor – her dad was a pastor at one of Rick Warren’s churches at the time.  It’s NEGU.) and a small monkey (that he gave to Peter for Valentine’s Day).  A therapy dog came to visit.  It was the biggest Golden Retriever I have ever seen.  His name was Jacob, and he was huge and beautiful.  He came right after Cindy and I were wiping our eyes from watching Marley and Me.  Sam was excited, but he was really missing Lucy (his own white golden retriever).

So Sam was not bored.  He did not complain at all until they took the leads off.  They used something like fingernail polish remover, so it was hard for him to breathe.  It was hard for me to breathe it in too!

We know he has an increased chance of seizures at some point, but there is no sign now; and we are so so thankful for that.

Since he does have a place like Andrew has on his brain (just in a different spot), we did decide to try him on some medicine that will help with focus (one of the areas where his brain is affected per the MRI).  He has missed school for weather since we started it, but he is picking up work at home and doing it without being asked.  Now Peter has started to bribe him, so he is working even harder.  We are hoping and praying this will help.  And we are hoping it is temporary until his brain takes over and does what it should, per the neurologist.  We have not seen many side effects – except not as much grazing eating which is good since he is diabetic.  He is in a sweet little mood all of the time and has not changed there.  I just cannot wait until he curls up with a good book to read alone.

Andrew was sick the other week with bronchitis.  He saw one of the docs and got an antibiotic.  Later that day, he got worse and ran a pretty good fever until late at night.  Since we are so concerned with seizures with fever, I got up in the middle of the night to check on him.  (He had told me sleeping on the little couch in his room was not necessary – though he felt so terrible.)  His fever had broken, and he had not had a seizure.  However, he felt so much worse that I took him to the doctor again, at his request.  It is amazing that he did not have pneumonia, but he was just very very sick with something that was going around.  It took a few days, but he felt much better after that.  Sam had something similar the weekend before and actually ran a high fever.  So we think they caught the same thing.  They don’t usually share illnesses, and they don’t usually pick up viruses going around.  Sam had very low blood sugars through his – which is the opposite of strep.  So we knew this was certainly something different.  Andrew has lost some weight again, but we are thankful he is feeling much better and did not suffer any seizures.

Andrew and Peter both have been going out of their way to spend time with Sam.  We have been having game night every Thursday.  They love it and are quite competitive.  They are planning on going out in the snow today – for maybe five minutes or less!

Thanks to those of you who pray for Will.  We have not seen him much, but I have seen him some.  These last few months have been the hardest of my life.  It’s hard not to be mad at people, and God has given me other people (especially on my worst days) to comfort, encourage, and reassure me during this time.  It’s not about the other people; it’s about my child.  The one I love so much.  And I have to remember that God loves him more and knows ALL.  And I try to rest in that.  I have been doing better turning him over.  I had a good meltdown yesterday, but I was working on bringing wood up from the basement and really just took it all out on the wood.  I just miss him so much.  Please keep praying for him.

I know I am not alone.  I can feel God’s presence.  He promises to be right with me.  And He is.  And I know I could not get through these days without Him.

In I Peter 5:7, it says to cast all my cares on Him, because He cares for me.  In I Thessalonians 5:16-18, it says to rejoice and pray without ceasing and give thanks in ALL circumstances – because this is the will of God for me.  It’s my life.  My story.  And this terrible, trying time is part of it.  I have awful days trying to not doubt and not worry.  The only way I can have any peace or confidence is to trust Jesus.  To lean on Him.  To trust Him.  And that is what I am actively trying to do every single day of this.  It carries over into other things.  And my days are hard, not perfect.  And it’s a struggle.  But I know Who wins in the end.

Thanks for praying for us.  Stay warm!