Westfall Web

So last weekend (wow has it really been a week already!) I saw Something in Greyson’s mouth (other than his hands which are constantly in there).  When I pulled his hands back I realized that he had somehow got his cuff into his mouth and he was chewing on it.  I think this is because the cuff was full which means no air can get up to his vocal cords, making him silent.  I’m convinced he was chewing on his cuff to let some water out so he could make noise again.

Tonight he was sleeping soundly as Grammie Joe held him but then he woke up and now is refusing to go back to sleep.  He is obviously very tired but just as he is about to drift off to sleep he will thrash around and wake himself up again.  If only he could recognize how GOOD sleep is!!!

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 So not a lot to write about other than we have been having a great time playing with Greyson.  Today Stacy and I standing over him and quickly squating down and tickling him.  The first couple of times he was startled, then he thought it was funny.  It’s a lot of work to entertain him, but as soon as you stop and walk out of the room he sets off an alarm.  Last night I was working on the computer and the nurse was in the kitchen drawing up his meds.  Stacy was in the bedroom.  I heard the alarm go off and went to check on him.  When I walked into the room and said, “hey buddy, what’s the problem?”  he just looked up at me and grinned.  Later when I told him goodnight and to be good to Gloria he gave me the same little ornery grin he gave me when I talked to him earlier.  I think he’s learning how to work us by using his machines.

Well it’s been a couple days.  I was waiting to see if anyone complained, but I guess everyone was busy with the holiday weekend.  We have been doing fine here in the Westfall household, enjoying the sun and somewhat warmer weather.  Yesterday we dressed Greyson up in these coveralls for a big party we had here at the house.  He really wore himself out with all the people to interact with.  He had just drifted off to sleep when people started showing up.  That woke him up and he didn’t want to go to sleep the rest of the night, fearing he might miss something. 

It was so fun to have people over (they brought TONS of great food) to visit with and play games with.  We are talking about doing it again for our church staff party (ironically last night was almost a staff party as we were just missing the office workers and youth pastor and his wife).  It is nice that they are willing to have the party here so we can be a part.  Greyson like it too as he continues to love social interaction.  Once he gets older and has a stronger immune system we are going to have to keep a rope tied to him as he seems to love everyone! 

So today was a beautiful day in Bremerton.  So nice in fact that we decided we couldn’t stay inside all day.  We loaded Greyson (and all his gear!) into his stroller and walked down our drive to get the mail before doing two laps around our house.  At first Greyson didn’t like it much (he’s not a fan of having the bright sun shine on him) but soon he seemed to really like it.  When we were done we decided to load him into the car and go for a drive.  Part of this was the realization that the only time Greyson goes in the car is to go to the Dr’s, which means he gets stuck with a needle.  Well we don’t want him to think that happens everytime you go in the car so we took him out for a drive. 

As you can see he has enjoyed having his grandma Terry here to visit.  He hasn’t smiled directly at her yet, but he has really enjoyed the attention she has lavished on him.

So today we spent the majority of the day over in Tacoma at the nefrologist’s office.  It was an OK visit but nothing came out of it at this point.  They want to analyze his urine but were unable to get any in the office.  That meant we had to try to collect enough urine for the tests at home.  Ever try that with a baby?  They don’t exactly pee in the little specimen cup when asked for a sample.  It was quite the process.  All day we were trying to get him to go.  At one point I checked him and he had gone so I took the bag in to put it into the specimen cup, when I came back he had went all over his pack-n-play!  Then later after we were done collecting, he went all over Stacy while she was changing him, and really went right after that in his bath.  What a defiant little kid.  Ask him to do something like give you a sample and he waits till you don’t need it anymore and gives you samples all over the place!!  Oh well at least we have what we need.  Now it can be analyzed to see how much calcium and some other stuff is in it, which will tell the nefrologist whether or not to put him on some new meds.

Greyson had some visitors tonight that stopped by to bring us some food.  He seemed really interested in checking out the kids.  We have been so blessed by people reaching out to us.  This meal came at just the right time also as Stacy and I were beat today.  We had no nursing yesterday, last night, or today.  Thankfully we have a nurse tonight so we can get some sleep.  4 hours is just not enough to live on.

Well today was a day of firsts for Greyson.  We tried him out in the hip hammock and he seemed to do OK with that.  He was a little unsure as were we (I think for different reasons) but it went well and was fun to try him out in a  new position.  We also gave him his first bottle……well sort of.  See Greyson needs to have a swallow study to see if he can begin to take food safely by mouth.  The problem is we found out in order to do a swallow study he needs to be able to take around 2 ounces of fluid by mouth.  Now without the swallow study how are we supposed to know if he can take 2 ounces by mouth?  So tonight we decided that since we know it is possible to put saline down his trach (we have to do this sometimes to loosen up the secretions and we suction it right back out so it is safe) we decided to put sterile water in a bottle and see if he could drink some of that.  So Stacy worked with him on the bottle while I stood ready with a suction catheter ready to suction on a moments notice.  So how’d it go?  No idea.  We think he may have drank some, quite a bit definately wound up on his shirt, but he did keep the bottle nipple in his mouth better than his pacifiers so that was possitive.  Basically we are going to have to keep working on it with him to see what he can do, so we can take him in and see what he can do!

Not much to report today.  Greyson was pretty sleepy for most of the day.  We did figure out (well Stacy figured out) a great way to hold him in the chair in his room.  Very comfortable for both Greyson and the one holding him.  Nice.