Tuesday, September 10, 2013

Daniel's Treatment Today

Today was Daniel's first Infusion treatment and he was a champ!!  We started our morning getting Steven off to school and taking Josh to the baby sitter's.

When we arrived at the doctor's office we spoke to the doctor about a rash that Daniel has developed from the wart treatment that he has been having.  We then met our nurse who will be working with us to get us trained to do the infusions in our home starting next week.

 The nurse started the treatment and Daniel looked at her and said "Wow, I didn't even feel that!"  He then laid back and played with his toys and watched movies for the next two and a half hours.
 Once the treatment was started we went and got Steven from school, we knew that he would be super worried about his brother and we wanted him to see that he was just fine.  They sat and played a football game for about 45 minutes before we sent Steven back to school.
 One of the things the nurse brought was a monkey that she showed Daniel everything that she was doing to him on the monkey.  And then gave Daniel a book on infusion treatment that was written in kid terms and a journal for his monkey to "record the monkey's feelings."  This was such a blessing today because Daniel did not express very much of "his" emotions but the monkey had all kinds of emotions that he wanted to talk about.  Daniel's monkey has now gotten three infusions since we have been home tonight and I was informed that he is feeling much better and the medicine must be working.
 The one struggle that we had today, which was a very minor one at that, was that Daniel will have to take Benadryl at the beginning and end of each infusion.  Which of course makes him very sleepy but as most of you know Daniel does not slow down for anything really. . .

So the doctors nurse was a huge help, she brought in Wreck-It Ralph, which is one of Dan's favorites for him to watch.  He was just sleepy enough that he laid down and watch it from beginning to end and loved it!  This not only helped pass the time but also helped him calm down a bit.  We are probably going to have to invested in this movie before next week because it was a huge help!

After the doctor we went home and laid down some more, which he was not super happy about but did pretty well for a time.

He then decided that he needed to have a battle!  I had talked to Daniel about the need to rest his leg, where the medicine was still absorbing in his body(it looked totally gross like he had a softball sticking out of his leg) and that he needed to do something that was calm.

So of course it made perfect sense to him that he should sit and put a battle together on the coffee table. I was then informed that this was totally fun to do without Josh around because he didn't have to worry about the little parts being eaten by his brother.

As we were driving home from getting Josh from the sitters the song "Whom Shall I Fear(God of Angel Armies) by Burning Lights came on the radio.  Daniel was singing his little heart out and I got a short video of him before he noticed I was recording and wouldn't let me record further.  I was crying my eyes out by the time we got home.  From the mouths of babes. . .

The song says:
I know who goes before me,
I know who stands behind,
The God of Angel Armies is always by my side.
The one who reigns forever
He is a friend of mine
The God of Angel Armies is always by my side

So whom shall I fear. . .

The God of Angel Armies was definitely beside Daniel today.  His presences was felt and our prayers were definitely answered today!! The treatment could not have gone more prefect.  As of now Daniel has not had a single side affect that the doctors talked to us about, the doctor even thought this was odd.  But we of course know that we serve a Big God who loves us and we know that he was protecting Daniel today in so many ways!  The love and support that we have felt today from the text messages starting early this morning, the meal brought to our house for dinner(and many others offers to do so), to the friends dropping by to encourage us and Daniel is overwhelming.  We are so thankful for our family and friends who love us so much to show us this love in such tangible ways on this hard day.  We know that our God is bigger then this disease and we look forward to the doctors not being able to explain the God miracles that we believe will happen in and through these coming months.  Thank you for your prayers and support!  
God be with you.

Ang and Ryan

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