Westfall Web

**Reminder.  To play video left click on it to select it, then right click and select play.  If you can’t see it you will need to install flash media player.

So if you watched the video you can tell Greyson is getting quite good at grabbing things now.  He did this about 4 times in a row before we got the video camera and taped this.  He continues to show improvement in his gross motor skills (this is probably the area he is furthest behind in).  Guess that’s about it.  Video speaks louder than words!  Oh for those who were not tracking his vent vacations well he is still at two sesssions off the ventilator 3 hours each.  Or 6 hours a day total over two different sessions.  We see the pulmonologist on Monday so we will see what happens after that.  Until then we are just enjoying the freedom that comes with six hours being vent free!

Today we saw the cardiologist and the nephrologist.  The cardiologist said Greyson’s heart was looking good and that he should continue to get better (his heart had thickened a bit months ago from his pulmonary hypertension).  He told us if there is any excess pressure right now it is minimal and nothing to worry about.  He also confirmed that the heart rate issue we were concerned about last week was not a problem at all and something that is very normal for all kids. 

We also saw the Nephrologist and she said things seem to be going along fine as well.  There was a small amount of blood in his urine but that is to be expected since he still has the kidney stone rolling around in there.  So far it continues to not be problematic so we will just keep an eye on it and wait till Greyson is older to treat it.

Greyson also stopped by the PICU today and delivered some treats to the staff.  The few staff that saw him were quite thrilled with how good he was doing and thought he was looking excellent.  This of course made mom and dad quite happy to hear!  We didn’t stay very long as we didn’t want Greyson to be comfortable there and kept reminding him that he should only visit that place, but we are thankful for the care he received while he was there.  OK I need to get in and feed him as I’m running a little late.  Sleep well everyone.  (I’m going to try putting the milk in Greyson’s stomach tonight instead of on Stacy’s head.  We’ll see how it goes).

Yep today was the day Greyson finally made it to church.  Actually he went twice, in the morning and evening.  This morning he did good until the sermon and then coughed and started screaming….I mean crying, and had to leave.  I missed the drama as I was downstairs in children’s church scoping out my new job.  All in all he did well and it was fun to show him off to all the people who have been praying for him for so long.  His dedication is just two weeks away (August 3) so we thought it would be good to give him a test run before he goes in front of everyone for his dedication.

OK so I have a story from last night.  As most of you know I (Bob) take the late shift which means I stay up till between 2 and 3am with Greyson.  Well last night we had him in our bed and I was getting his 1am feed prepared.  Stacy was sleeping away but as I got ready to feed him Greyson was getting a little fussy and Stacy woke up a little.  I was trying to cover all the basis to make him less agitated (feed him, change his diaper, suction him) and decided maybe I should change his diaper while I was feeding him to make him more comfortable faster.  Since Stacy was “semi” awake I asked her to hold his feeding tube while I quickly changed his diaper.  Less than a minute into changing his diaper Greyson gave a big swing with his arm, caught the feeding tube and pulled it out of Stacy’s hand, this caused the feeding tube to dump milk all over Greyson, the bed, but mostly all over Stacy’s head.  Stacy just laid there going “what happened” as she tried to wake up and fully comprehend why there was milk dripping off her head.  It was pretty funny actually.  From now on I think I’ll stick to one thing at a time, oh and I’ll let the sleeping parent sleep rather than trying to enlist their services during their sleep time! 

Today was a pretty laid back day.  We did take Greyson out to the mall so he could see some new stuff.  Unfortunately he slept through most of it.  Then we were going to go to Famous Daves  Barbeque for dinner but they informed us it was going to be a LONG wait to find a table that would work with us and our stroller (even though we had the single stroller, or cruiser as we call it).  So we had to leave without eating there.  It worked out OK as Greyson would have been off his vent longer than he is supposed to be.  So we settled for Famous KFC instead.  Somehow it just wasn’t the same…..

We got the sad news yesterday that one of our nurses is quitting next month.  We understand the reasons but it is hard to lose such a great nurse.  That will take us down to just one nurse, and she’s someone we recruited from the NICU!  Actually there is a new nurse who will be trained next week, the possibility of another nurse we are waiting to hear about, and a nurse that is moving to Bremerton in August that wants to take our case.  So we are just trusting that God will work it out in his perfect timing (which never seems to be as soon as we would like!). 

OK so this pic is from Monday but it was handy so I’m using it.  The only news we have from today is that we got a little scare with Greyson’s heart today.  See his heart rate is starting to drop lower and lower during the night (normal as he gets older).  Well lately he has been dipping down under 90 beats per minute.  This doesn’t last long before it jumps back up, usually hovering around 100 beats per minute when he is really sleeping.  We called the pulmonologist and they said to watch it and count how many times this happens in a night (going under 90).  Well our nurse last night actually listened to Greyson when this was happening, and noticed that his heart not only slowed down, but that the rythem changed as well.  This didn’t seem quite right.  So we called the dr. again today and finally found out that this is normal for kids and everything should be fine.  To put all our fears at ease we are seeing the cardiologist on Monday and they will check his heart out and make sure there is nothing wrong (this is not a special appointment, it we were already scheduled to see the cardiologist for his checkup so it works nice that he can see him and further relieve any lingering fears). 

So I don’t think I’ve mentioned just how wonderful my wife is, and I definately should!  Last weekend she let me participate in the 48 hour film project.  This is where you receive a character, line of dialogue, and prop as well as a genre of film on Friday night and then have until Sunday night to turn in a 4-7 minute movie.  Sounds easy but it really isn’t, especially if you want to do something good.  Anyway Stacy watched Greyson all weekend ( our friday night nurse was sick and couldn’t come, so she only had help on Sat.).  Then tonight she let me go to Seattle to watch the film on the big screen with other entries.  That is always one of the highlights of doing this competition.  Overal our film was one of the better ones we saw.  Anyway Stacy is awesome and I greatly appreciate her letting me get out and do stuff like this.  I’m waiting for her to want to do something so I can sacrifice for her to go to something fun, but haven’t had the opportunity just yet.  So just know that I have one of the best wives of all time and I recognize it!  She is even helping me get oriented to my new job (in August I will become the children and family pastor at our church, leaving behind the adult ministry title I have had for the last 3 years as well as the youth ministry title I had for four years before that).  Choose your spouse carefully because they can make or break you let me tell you.  Thankfully mine makes me look good!

This is a picture of the hat we bought Greyson on Monday.  He’s not certain he really likes it yet, but it does help keep the sun off his head.  Today Stacy made this hip sling to carry Greyson around in.  He seemed to settle right into it and enjoyed being up close with his mom.  The only downside was it got hot for both of them from the warm weather and all the body heat.  Perfect for winter time though!  (oh and we’ll use it during summer too, it just gets warm!).

So previously we had announced that Greyson’s dedication would be on Sunday July 27.  That had to be changed so now it will be on Sunday August 3 during our 9:30am service.  This time it is locked in (as much as possible!) so that date should be firm.  Again you are all invited to join us in celebrating all that God has done in and through little Greyson’s life on that day!  Well I need to go to the back and help with Greyson’s trach care.  Have I mentioned how much nicer life is around here with the 3 hour vent vacations?  Yesterday we loaded him up in the car (no ventilator, just the essentials of the go bag, suction machine, and back up oxygen just in case) and took him to Joanne fabric and Albertsons.  Today we did a quick trip to Safeway with him.  He’s quite the shopper!  Hard to believe that it is only a couple more weeks (the 28) and we will be seeing the pulmonologist again and hopefully getting more time off the vent as he seems to be doing really well.  Last night he even went the whole night without oxygen (he has been needing oxygen only at night basically since we began taking him completely off oxygen, we’ll see what happens tonight).

Today was a very LONG but great day.  It started early as we loaded Greyson up and headed to Kingston to catch the 8:30am ferry.  We did and went to Seattle where Stacy bought me some new shoes for my birthday.  Greyson was very good as he waited in the store while I worked at finding a good pair.  Then we headed to Tacoma for Greyson’s Dr’s appointment.  We were early so we took Greyson into Baby’s R us and bought a couple toys and misc. things.  That’s where we got the picture of the sunglasses.  He didn’t care to much for them so we didn’t buy them, but it made for a pretty good picture. 

Greyson saw the neurologist today and he felt like Greyson was progressing well.  We think he may have a sleep disorder (can’t remember the name) but it explains why Greyson thrashes violently in his sleep at a certain point during the night.  At this point it is nothing to worry about (unless you are sleeping right next to him and he hits/kicks you!).  After that we went to the lab and got some blood drawn for labs and then we met up with Ashlie, Jamie, and Corinne (NICU nurses we are friends with) and went to Applebees to hang out and catch up.  It was a blast!  While we are much happier at home, we truly miss the wonderful friends we made during our time in the hospital.  Tacoma has some amazing nurses in both their NICU and PICU.  We are very grateful for to be able to call them friends.

So Applebees is the correct answer to the question no one asked of “where will Greyson’s first restaraunt visit be to?”.  He sat on his dad’s knee for a lot of the visit and listened to us as we shared funny stories and just had an all around good time.  The waitress was even nice enough to pose for this picture to commemorate Greyson’s first time.  I think Greyson is trying to order something while we took the picture, that’s probably what the extra item on the bill was from!  (**that’s a joke there was nothing extra on the bill, and in fact I don’t think Greyson ordered anything, although he did make some noises a couple times………..)What a good day!