Westfall Web

Today Greyson was another first for Greyson.  The first time someone who is not a nurse took care of him for a the whole day.  Since we couldn’t cover all the nursing shifts one of our friends from church said she would help out.  She has a background with medicine and has EMT training but never took the final few steps needed to become a nurse.  Anyway this summer she came over and spent time with us learning to care for Greyson and today made her solo debut.  Everything went well and Greyson behaved himself well.

So Monday we went to the Dr’s again.  The neurologist said he was doing well, but needed to catch up in a few areas (pretty much what he says everytime) and the pulmonologist said he was doing well.  It was decided that we should try Greyson on a big boy trach so he no longer has the trach that sticks out so far from his neck.  This is good and bad.  Good because it is a non cuffed trach which means he is doing well.  Good because he can’t grab this one as easy (he wouldn’t keep his hands off the other kind and we were really getting worried he would decanulate himself as he was pulling on it alot).  Bad because it is not as easy for us to work with, and bad because he doesn’t have a lot of neck and seems to be pushing it off to oneside more than his last one.    We will get it figured out though and Greyson doesn’t care at all so it will be OK.

He got a new passy muir valve since his last one was not working correctly.  It quit working last Friday so it has been really nice hearing him again.  He also got off one of his diuretics so now he is just on one.  If he continues to do well in three weeks we will discontinue the last one (YEAH!).  There weren’t any changes to the ventilator as basically the idea now is to stay where we are, let him grow and get stronger, and go into winter.  He still needs oxygen most nights so while he’s doing great he still has some healing/growing to do.  The big test now will be to see how he does if he gets a little cold.  While we will be doing our best to prevent him from getting sick, seeing how he does with a little cold this winter will be a great indiciator as to whether or not he is ready to be completley vent free.  Lord willing he will make it through this winter and continue to do well.  If he does we can start talking decanulation (removing the trach) early next summer. 

He had physical therapy today and the therapists felt he is advancing nicely.  He is still behind in some of his gross motor abilities, but most of the things they are looking at he can do, he just chooses not to do them very often (like say when the therapists are here to evaluate him!).  We will continue to work with him everyday and enjoy seeing the progress that he makes almost daily.

OK so I hadn’t updated in a couple days but this was pretty long, so I think we’re even!

Just thought I’d update everyone, we are still here and will be posting updates again soon.  Over the last two weeks we have had our freezer die, then our washing machine, and our main computer.  This coupled with the fact that Stacy went back to work this week has kept us very busy.  I’ll try to update tomorrow now that I have the computer almost back up and running.

Today we said goodbye to the Phay’s and since Greyson was sad to see his cousins leave we took him to the Kitsap fair to cheer him up.  He did really well and seemed to enjoy it, even more than normal.  Usually he doesn’t get very excited about new things, especially if it involves a lot of people and noise.  He even smiled at a lady who was talking to him which is something he almost never does with someone the first time he meets them.  It was fun showing him so many new things and all the animals.  When he gets older we might even let him touch one!

We finally got Greyson to let us take a picture of his teeth.  He now has three teeth.  The bottom two are now through, and obviously the top one.  Today he enjoyed hanging out with his cousins and even got to go out to Seabeck and spend some time looking at the Hood Canal.  What a great day!

Today we had a great treat.  Stacy’s cousin and family came for a visit.  Greyson loved watching them play.  Tonight we all went to the playground and had a great time.  Greyson did some great work on sitting up on his own today.  If you get him balanced good to start he can hold his own for awhile.  It won’t be long and he will have it down without problems.  Then he’ll have begin working on getting himself into the sitting position, but no need to rush. 

We didn’t really take any pictures or video of Greyson today (it’s a shame I know!) so here is one from the other day. 

Yesterday Greyson and I went with Stacy to school and helped her set up her classroom.  Actually one of Stacy’s previous students helped her and Greyson and I…….entertained each other.  It worked well and Stacy got a lot done.  Then when we got home I worked a lot with Greyson on words like dad and mom and ball really emphasizing the b’s d’s and m sounds.  It must have made an impact because last night after we put him in his crib the nurse started really laughing and when Stacy went in to see what was going on Greyson was using both hands to hold his lamb in front of his face as he loudly talked to it.  I think he was trying to teach his lamb the same way I was trying to teach him!  Greyson didn’t sleep well last night so he napped a lot today.  Hopefully he will sleep well tonight since we don’t have a nurse and his mom and dad would like to get some sleep.  We’ll have to see how it goes.

Here is one of the pictures Stacy took of Greyson yesterday.  Greyson didn’t love the hat, but he did humor us long enough to get some fun pictures.  In addition to the hat it was fun to see him sitting up in the wagon on his own (well he was using the sides, but still).  Today went by fast, we all went to church and then Greyson and Stacy took a pretty good nap (I got a quick one myself!)  Other than that not a lot happened so I’ll keep this post short.  Feel free to go out and make your own watermelon hats, they are fun and very tasty!