Flowbee Hair cutting

After Hyrum's surgery, he refused to let me cut his hair. He was turning extremely shaggy as it had been awhile before surgery also.  I had begged for a few weeks to cut it, but got the same response "no I'm fine".  I finally told him, that I wasn't fine with the mop on his head and we needed to cut his hair. He broke down in tears and told me that he was afraid that the hair would go into his belly button.  I got one of those Ah Ha moments.  Spoke about it with John, and he looked online.  I had never heard of the flowbees until afterward.  Here I was thinking it was this new and cool thing, when half the people at work knew what I was talking about.

He wouldn't let us cut his hair until he could see how it worked, so John offered up to be the ginny pig.  Then it was Hyrum's turn...not so happy still.

But he finally calmed down and got his hair cut!

Roasting Dilema's

One of our favorite summer activities is roasting hotdogs and marshmallows over a fire.  This round, John was trying to burn a stump from a tree we had torn down a few years ago.

 Karl & Sarah were trying to lay flat to beat the heat.

 Rachel didn't care, she figured burn it and eat it.

 Hyrum though, got a bit creative with beating the heat.

 He found a mask to wear!

But he loves his marshmallows!

And the tube is out!

As of this past Tuesday Sept 9 we are tubeless. Hyrum did not want it out, did not understand that it would not hurt to come out. So 2 nurses, John and myself held him down while the surgeon snipped the stitch holding the tube in place and took out the tube. He was shocked when it came out. We then talked to him, because the doctor, John and I needed to insert the tube at least once each. So back to holding him down for the doctor. Once that was done, he was semi cooperative for John and very cooperative for me. Since then he has loved everything about his Malone. I can see it in his eye, I'm pretty sure that within the month he will not let us insert the tube. This time, he will be doing it himself. If any child could have a motto, his would be "I do it myself"

The one above was before we used some adhesive remover on his tummy. The one below is after he is all cleaned up!

We were told that the redness would go down and we would be left with a normal looking belly button. At this point, I'm just happy that everything is going smoothly and he seems to adjusted very well to the changes in his bowel management!

Angry Birds

This is what happens when we allow angry bird apps on his iPad.  At least he is being creative!

Karl Birthday

For Karl's Birthday, his Grandpa took him fishing.  He was super excited and became "Monkey boy" on his dad!

 And then he climbed in with Grandma and Grandpa and left with no cake or anything.  I didn't see him for 2 days

Back to Business

Hyrum loves helping in the kitchen.  Found him to be pretty good at grating food

Post op Day #2

I'm not sure where post op day 1 ended and post op day 2 began. As we put him to bed, I discovered that he had leaked poo all down his leg into his sock, all over the sheet covering his play mat and of course because I didn't discover this until he was in bed...so all his bedding now needed changing. So a "spit shower" later with clean sheets we were ready for bed. He slept good and hard. 

His IV kept beeping "downstream occlusion" so we finally adjusted his hand with stuffed animals. Then we learned that when he sleeps on his back his heart rate slows to 58, so we adjusted the monitors to accommodate that.

Then at about 3 or 4 the aide came in for vitals to find the bed soaking wet!  As we got Hyrum off the bed, we discoverd his IV unconnected. So not all the wet came from Hyrum. But he got another wash down, clean pjs, and clean bedding! The nice part was the nurse unhooked his IV. We slept great until 7 when the nurses came in with shift report. His IV proved to be too tired to work any more. But he wouldn't let anyone touch him, so before he could be stopped or slowed down, Hyrum ripped off the tape and IV all in one motion. Afterwards Hyrum wanted his iPad and real clothes on.

Hyrum has done really well for the rest of the day. He has had more chocolate milk today not to mention a couple of dounuts, Mac and cheese and milk shakes.

We are going to need to do an extra flush just to get rid of all that processed sugar!  But we are down to taking only ibuprofen. We cleaned up his surgical site and We exchanged his bandages for new ones.

He handle the flush amazingly well once we convinced him to let us hook him up.

 Everything is looking really good and like we get to go home! He was super excited to ride in a wheel chair. 

But even happier to be in the car with his brother. 

And big brother was so happy to have him home that he let Hyrum play with his leggos well into the evening

Overall a very successful day!