Our Week

A busy week and late on Wednesday we finally were able to move things back into Junior's room and bathroom.  Fresh paint kept us out of there until Thursday but at least we could start getting things back to normal. 

Junior was a great sport and didn't mind sleeping in the living-room, at least not the first few nights.  By last night he was oh so ready to be back in his own bed. 

Another night of sleeping on the living-room recliner.  Junior was enjoying movie time. 

Yonder thinking my air mattress was his spot.

Enjoying hanging out on the air mattress and watching tv with Yonder and Abby over the weekend.

 

A little time outside when the weather improved.

 

Sunday evening Junior and Yonder did some painting.  Junior was very particular about the colors and order they were painted. 

 

 

Helping his boy with his artwork. 

 

   

 

 

Junior's post on his fb about what they did Sunday evening.

 The weather was cold but the rain finally stopped so we actually made it out for a nice walk. 

 

 

 

   

Goofing around

 Yonder loves to be right by his favorite person.

 This Tuesday they finally got started on the ceiling repair.  The patched spots are where they holes were.

Wednesday Junior had his GJ tube replaced at the hospital.  This is done every 6 months.
He did great and handled it like a champ. 

 On the way home from the hospital I got a nice reminder of how important it is to give Junior as much independence and control as possible in his world where most things are not in his control.
I stopped to get him his after appointment Dr. Pepper and decided to also grab food for both of us as well(his to blend for his tube).  After ordering the food they asked what drink we wanted and though I usually just tell them I instead asked Junior if he wanted Dr. Pepper.  Something so small and insignificant to most but to him it meant so much.  The look on his face was priceless.  He gave me a big "ya" and was grinning from ear to ear with such a proud look.  I had not just asked him but asked him in front of the person taking our order making him part of the process. Giving him just a little independence and control.  A reminder to find those moments and just because I know what he wants Dr. Pepper or whatever else it may be, doesn't mean I still shouldn't ask him and let him feel he has control.

Junior's face when he has had enough kisses but Yonder is sure he must have one more.

 Now everyone look somewhere different and not at the camera.  

 Time for some Bones episodes, Junior loves that tv show.

 Ceiling is done and I was able to move the medical shelves and all the stuff back into the bedroom. 

 The closet had to be emptied as well and it is all back together now.

 Yonder got spoiled with a few months of Bark Box back at Christmas.  Yesterday his box arrived and he couldn't wait to check it out. 

 

 Today the weather was cool but gorgeous so we headed out for a nice long walk.  First to Hobby Lobby where these two had fun goofing around with bunny ears.

Yonder's face says it all, "really, you are making me wear bunny ears, how embarrassing" 

 Then to the pet store where both of them enjoyed looking at the animals. Yonder was especially intrigued by the birds though Junior's favorite were the fish.

 

 

 

 

 

 

 Junior really loves watching these fish

 

Thursday Junior had his stitches removed and we pray that this crazy journey with his port is now over.

Getting Thrown Another Curve

Monday morning Junior was relaxing as he continued to recover from his surgery.  I heard water but he was watching an episode of the A-Team and they were in a boat so I initially didn't think anything of it.  Then I realized it sounded awfully real and not like it was coming from the TV so I went investigating.  I discovered water pouring(not dripping) from the ceiling in his bedroom and also from the bathroom ceiling.  A burst pipe in the apartment above us was causing all this "fun".  A bathroom full of water and wet carpets on the end of his bedroom and in the closet. I spent Monday moving everything out of those areas while the maintenance guy was cutting holes in the ceiling and pulling back the carpets.  Carpet has been disinfected and cleaned, fans and a dehumidifier were brought in to dry out the floors and ceiling so everything is now dry. But we will continue sleeping in the living room until the ceiling is repaired.  They had to cut some fairly large holes in it to drain the water so there is exposed insulation.  With Junior's lung disease I am just not comfortable with him in there until it is fixed.
I am so very thankful we were home when this happened or it could have been oh so much worse. I am also grateful none of his medical equipment was damaged.

Junior thinks it is great to have a slumber party in the living room.  Yonder is sure the recliner I am sleeping is, is actually his and tries to sneak into it as soon as I add the sheet and blanket for the night. 

 

 Trying to convince me this is his spot.

I would really love to get the house back to normal in the next day or two but with the horrible wind and rain we are having I am not sure the maintenance guys for our complex are going to have time.  I will look at it as a time to do some organizing and getting rid of things no longer in use.  Currently the medical shelves from the bedroom are in my dining area along with much of his bedroom stuff so perfect time to work on it. 

Not the Day We Had Planned

The past couple days Junior's new port has looked irritated and the line was looking quite pronounced.  No signs of infection but it just didn't look right.  I contacted the surgeon  and she looked at a picture and told us to use some cream and keep her updated.  This morning when I checked it I noticed a little blood on the gauze covering the port.  Closer inspection showed the edge of the port and line was literally coming through the skin in one spot.  A call to the surgeon with a photo and we were told to bring him on in.  She took a look and they headed to the OR to fix it.  They had to remove the main part of the port and put in a new slightly smaller one.  So thankful that this time there were no complications and within a few hours we were on our way home.  The surgeon said in her many years and hundreds of port placements she has never ever seen anything like this. It appeared that the skin just continued to pull tighter across the port until it gave way, possibly the port itself was for some reason pushing up on the skin.  Junior is a pro at throwing those curve balls.

Yonder waiting patiently while is boy was in surgery.  He was so excited when he saw Junior ready to go home afterwards. 

 So very thankful and blessed to have this brave guy recovering at home this time.  He is dealing with some pain but after a little help with that has been able to rest comfortably.  Please pray for minimal pain and a smooth recovery with no more bumps.