Sweetness

The last two days at home have been heavenly. We have rested, caught up on laundry and just enjoyed being at home. David has not been a super easy patient. He is really whiny and high maintenance which is to be expected considering how tired and worn out his body is.

Speaking of worn out, last night during our yummy dinner, both Hope and David were tired and crying for me. Mike could tell that I was maxed out being a nurse and Mommy and sent me to my room for a wonderful time-out at 6:30. Well, I enjoyed my time out so much that I fell sound asleep until 10:30 when he had to wake me up for my nursing duties. David went to sleep at 7 and then he put Hope to bed by 8 and Kyle by 9. This last hospital stay did us all in and I am so thankful for the good rest we have gotten.


Earlier in the day, we made homemade bird feeders with Cheerios and yarn. They strung cheerios on yarn and we hung them up outside for the birds.

I miss teaching so much, that it is fun to have school at home:)

Here is David modeling his new hat from Samantha Bailey. It is so cute and fits his little head perfectly. We of course love the VT colors she made it in!!

Everyone knows that David loves to wear a shirt and tie. He wanted to wear one so bad yesterday but I vetoed it. He and Hope then got creative and clipped all his clip-on ties to their shirts! They out smarted me! HA!

We spent some time yesterday setting up our classroom in the kitchen. Mrs. Hubble (David's classroom teacher) is starting his homebound instruction today. Due to his counts being low he is unable to go to school for a while, so his homebound starts this week. He is super excited that she is coming!

Here is his Cefepime via IV. It comes in these litte jars with a "balloon" inside full of medicine. I have no idea how it works, but the medicine deflates the balloon as it goes in. It takes about 30 minutes to finish. I have to flush with saline before and after the medicine and then flush with Heparin afterwards to keep the port from clotting. After a little practice it really is not hard. Thankfully we are also on a better schedule with it.

Who can resist sweet little legs in her fuzzy socks? She did great wearing panties all day yesterday.

The handwriting obsession continues and here she is practicing her name on her dry erase board!

David doing some addition work on his dry erase board with the help of the abacus. He is so excited to do school work at home and is a better student than patient right now.

This picture melts my heart so much. Usually David rests during his IV meds, but yesterday they got up and played while it was running. David was carrying it around, but Hope said "here I carry it fo' you Dave!" Such sweet moments!

Today has been another relaxing day. Hope was blessed and got picked up to go to playgroup this morning at a friends. A new playgroup has started up and I could not go and take David of course, but a sweet friend picked her up and another sweet friend brought her home. She has told me lots of sweet stories about her playgroup time.

I cannot believe it is time to go to Cville again tomorrow. Hopefully this will be an easy and quick trip. His port needs to be change which will be dramatic for him. He hates the tape coming off and of course re-accessing it is never easy. Sigh. He will also get Pentanamime via IV tomorrow (no more masks ever!!) We will also see if his counts are high enough to start the next five day chemo regimen next Thursday.

I am so thankful they gave us this break and tomorrow is just a port change and checkup and not another heavy five day chemo again. He is so weak and skinny that I am so thankful his body has another week to rest up before his white blood cells are wiped out AGAIN. This process is so hard to watch but I just keep reminding myself that this is part of God's plan and that we are not alone.

I am anxious to see Haley and her family tomorrow. I am sure they were devastated to hear that the blood was not a match. They were told early Monday morning around 8 that there was a child on life support and that the heart could be a match for Haley. They drew blood and were told it would take 3-4 hours to be an answer. When we were discharged at 4:oo p.m. they were still waiting. It must have been so hard to hear that it was not a match after waiting all day. They have been heavy on my heart this week and frequent in my prayers. God love them.

Tomorrow I will update after our clinic visit. Please specifically pray:

That the de-accessing and re-accessing of the port will be as stress-free as possible. It is not pleasant but those nurses are awesome and are experts!

That David's vitals are good and that is weight is the same or even more:) I have documented all his intake to prove that he is eating at home:)

For safe travels for us all. Pops has a cold so he is out of commission tomorrow. My Mom and Hope are going with us. We are charging up the iPads and DVD players to get us through the long day tomorrow.

Thank you dear friends for all the texts, emails, calls, and fb messages this week. We are so blessed that our son has such loyal fans cheering for him and most importantly praying for us all.