Updates:

 

 Two big updates:

We adopted a female black lab!  She's about 15 months old.  We got her off Craigslist.  I know, I know.  But it worked out.  She's a good girl, for the most part.  Biggest issue is that she's a runner. Twice within the first couple of days we had her she got loose and took off.  Poor Gene almost had a heart attack.  But he got her back.  The best thing about her is that she is not timid with Casey, his medical equipment, nor his chair!  That's always a worry.  She just took it all in stride.  She's also very, very sweet and pretty.  She's much smaller than Jaxon was.  We weighed her here and she was about 53 1/2 pounds.  

The second thing is that our renovation has begun!  The crew came on Tuesday, the 13th with the contractors and they made a plan (for what it's worth).  They started actual demo on Wednesday, the 14th.  So far they haven't touched the upstairs bathroom so we can use that, thankfully.  The kitchen is GONE!  The living room is gone!  Right this minute the entryway floor is still there and they haven't touched the laundry area.  Tonight we have to get the rest of the things out of the entryway as the floor will be worked on tomorrow.  

Oh, the the electrician is here.  I'm not sure what they are doing but I hope progress is being made.  Plumbing and electric are going to be HUGE.  Hopefully they built enough into the contract to cover what needs to be done.  We are already adding to the cost as there some sill rot and some other things that need to be fixed that I don't even understand.

What else.

Casey had a pulmonary and an ENT appointments yesterday.  Pulmonary was fine.  Pretty much a check in and a catch up.  Dr. Cowan will talk to Janet about trying the Astral vent and also maybe the Shiley trach that they just re-designed.  ENT sucked out his ears.  She thought they were a little damp.  MAY eventually try some powder to get the flora to be more normal.  We talked about the supragranuloma (not sure if this is the proper name) that Dr. Lahiri found when he did Casey's bronch a month or so ago.  She thought it would be a good idea to remove it.  It's above his trach so it's not affecting his breathing or trach right now.  But who knows if it will grow more.  And, if for some reason we couldn't get his trach in, the granuloma would block an intubation tube.  So we probably will do it but not not super soon.  It entails the whole nine yards: fasting, IV, sedation, surgery, and recovery.  Ugh. She thought his trach site looked good.  Casey was pretty cooperative overall.  

Some funnies about the trip to UVM.  We had to bring Molly with us as she's still too new and nervous to leave here alone.  So Gene dropped Nurse Staci, Casey and I off and they went on adventures.  Molly got to pee all over Burlington!  She loves riding and was mostly cooperative.  

Dr. Cowan had a resident with her.  First thing he says to the resident. "Korean".  The resident said, "You got me"  :)  He was a good sport and put up with Casey's questionings.  Of course Casey wanted to know his wife's name (not married), children (none), address (Burlington).  Etc.  

Ears

We made it out of the house on time today--8:15 or so.  Gene had warmed up the van and got us a little gas so that was a good thing.  It was 0 degrees! 

Ran into Debbie from school in the lobby of Fletcher Allen.  I guess she works as a customer service rep as well as at school.  She tried to get Casey to chat with him but he wasn't having any of it. 

Got in to see Dr. Hubbell pretty quickly.  I noticed that the person checking in after us had an appointment with him 5 minutes after us.  He must rake in the bucks seeing patients for only 5 minutes!  And, he literally did see us only for 5 minutes.  But I guess it was okay.  He tried to look in Casey's left ear and couldn't see a thing because of all the debris in there.  So he got a good sucking out.  We teased him because we said we wished the suction hose was clear so we could see the junk coming out.  Nurse Julie and I love that kind of stuff--as long as it's coming from Casey, anyway.  He suggested we now do Ciprodex drops for 7-10 days and then come back in 3 months.  I had asked about new tubes but he said let's wait and see. 

Got a coffee from the kiosk and headed up to see Mrs. Marshall, Julie's mom.  She was in for a 'tune-up'.  She is getting some IV antibiotics and respiratory treatments (no, she does not have a flu or anything catching).  So, we made her day :)  She was happy to see Julie, and then I came in and then she was over the moon to see Casey.  He was perfect!  No loud vocalizing.  He was nice and quiet and listened and said a few things on his DynaVox. 

Hit the gift store and Casey wanted to get Grandma (well, we call her that) a book.  We know she likes puzzle books so we picked her out one and some Jolly Ranchers.  Julie ran them upstairs to her while Casey and I got him on wifi. 

We were fading, at this point, so we headed home to get some food. 

Colin was good for Gene. He wanted to doze and listen to the radio so Gene just worked from the wish room and Colin hung out in bed. 

I got Colin washed up and dressed and everyone settled into the living room. 

Had a little lunch.

Took advantage of Julie being here and Gene so I went up for a nap.  Julie and the boys played some wii. 

I made some Rice Krispies treats.  Played some more wii.  Talked to Chris, Mom and Dad.  And that's where we are now. 

Oh, earlier, Gene said, "Where's Jaxon?"  Usually Jaxon is in the living room or up our butts following us around.  I went and looked for him and found him, Moxie and Nugget staring at a dead vole in the yellow room!! GROSS!!!  I guess the voles taste really bad so they don't eat them, but they were still interested in watching the dead thing.  I think it was Nugget that got it.  I had seen him sitting by the back room not long before--that's usually a sure sign that there's a creature.  Thank goodness Gene was home to get rid of it!

Pamidronate Infusions, ugh

So we're here.  Casey went in first.  Infusion Bay is very busy today.  They only had space for one boy at first so we volunteered Casey.

Julie and I got him out of his chair and comfy on the bed.  IV came right in to get him started.  He needed some warm packs and towels because his hands and arms were freezing, but it's about 8 degrees out so I'm not surprised.

IV Nurse Micki got his IV in pretty quickly (for us, anyway).  Success on first try in left wrist.

Colin was another story.  He ended up with 3 picks, total.  One successful, finally.  I was not happy but I didn't actually see when they were poking.  Colin was a trooper although he did "OW" a lot and had shed a tear, but no full blown crying.  It took the two IV nurses trying but they were successful in his left antecubital.

Colin was very happy watching movies.  His first one was Tron.  After that I tried reading City of Orphans with him but didn't get too far.  He is going to be in big trouble with Priscilla tomorrow because we didn't read as far as we were supposed to.  Funny how during the movie he hardly "owed" at all but when I was reading he was full of "ows." 

Woozy Colin.

Casey went through periods of being good and being very needy.  He had a grand time yanking the Child Life Specialist's chain :)  Jenny was a good sport about it and played along with him.  He was telling her that he wanted a funny movie/show about animals that is normally on during the day.  He had her scouring the Internet looking for this show--that doesn't exist, lol!  I think she was impressed with his DynaVox use and tried to honor his requests. 

Grump and woozy Casey

Casey was done right at 2:00.  The nurse had called ahead to Dr. Hubbell's office to say we might be a tad late.  We only had to wait for a minute before they took us back and Dr. Hubbell came in right away.  Casey has only one tube which is in his right ear (he's been like this for a couple of years now).  The left ear looked perfect.  His right ear had lots of 'debris' that Dr. Hubbell sucked out.  Julie and I both wish that the suction tubing was clear so we could see what gunk came out of him, lol!  He also looked in the back of his throat because Casey had said it hurt yesterday but it looked nice and healthy to him. 

Interesting aside here.  Yesterday Casey told Julie several times that his throat hurt.  She looked in his mouth and felt around but didn't see anything concerning.  Then, at bed time, I could hear something in Casey's throat when I suctioned his mouth.  It took a lot of work--coughing, saline and pressing on his tongue--but I got a pretty large plug out that was very stringy.  I wonder if that was bugging/hurting him?????   With Casey, it's hard much of the time to know when he's being serious or just telling us tales, so this was interesting to me. 

Colin was still infusing when we were done so Julie and Casey packed themselves up and went downstairs to check out the gift shop.

Finally, Colin was done infusing and had his saline flush and was done by 3:00. 

Headed down to find Casey and Julie.  Got the van.  Loaded up.  Julie drove home.

It was a very weird drive home.  Casey was quiet as a mouse and we are NOT used to that!  I kept asking Nancy if they were okay back there. 

These infusions sure wipe the boys out.  Casey even more so than Colin.  Casey looks pale and puffy and tired.  Colin looks a little pale but is quite full of it and is yelling at Aunt Chris while she plays wii.  Casey goes from being very quiet to fussing loudly, doing a little talking on his DynaVox. 

I felt very comfortable driving the van.  It sits higher than our old van and the nose is longer but it was pretty easy to drive.  YAY!!  It will take us a little bit longer to get used to tying down the boys chairs but we did pretty well.  It would help if it wasn't as cold so we could be more comfortable while we work on positioning and all that.  But it's nice to have these Q'Straint QRT Max tie downs.  It literally takes one hand to secure them and one foot and a hand to undo them.  So much nicer than our old ones that I don't even know the name of!