Westfall Web

Man I don’t know if I’ll get the blog caught up as it has been a busy summer. Even if I don’t, here are a couple things we’ve said goodbye to lately.
Oxygen. Well not entirely, but we said goodbye to supplemental oxygen this summer. Greyson has done on “room air” or 21 percent oxygen and hasn’t required any extra since last thanksgiving, so we packed it up and sent it away. We no longer need the “no smoking, oxygen in use sign” that has been in our window since Greyson came home. **We are still a no smoking house, we just don’t run the risk of catching fire now!
Flovent–This is an inhaled steroid medicine Greyson has been on…….forever. His lungs, while still weaker than normal, have been doing so well and he has not had any episodes so we have weaned him off this medicine. So far he is doing fine without it! Goodbye puffers (as we liked to call them)
Crib–Well Greyson has been in a “toddler” version of his crib for awhile, but he has now transitioned to a full twin bed. He can’t quite get in it himself but is feeling pretty grown up sleeping in it….which leads to……
Mom & Dad’s Room–Yep, Greyson is now sleeping in his own room, without a monitor, and YES we are sleeping too! While there are times we have to go check on him cause we wake up and wonder, it is very nice to have him transitioned to his own room.
And finally…………..Goodbye Walker. As you can see in the video Greyson has enjoyed using his walker again as a toy, but we will soon be officially saying goodbye as we got it out in order to donate it to the therapy group that loaned Greyson a walker for so long. It was a great help but it is nice to be saying goodbye.

We took this video this week after setting Greyson on the step with the remnants of a milkshake. After shooting this video Stacy and I went inside the house (with the front door open so we could see Greyson) and left him just like you see in this video. He was so content to sit there and “eat” the milkshake all by himself. We finally stopped him when he started using the straw to draw on the cement. Not that drawing with milkshake is a problem mind you, it’s not. The problem was when we saw him try to resume eating after the drawing with the same straw.
We let him have a taste. After looking at other kid pictures maybe we need to let him eat more dirt. Do you think that would help him learn to eat? Personally I think it would turn me off to food, but to each his own I guess.

Greyson decided to help me unload the dishwasher a couple days ago. He needed a little direction at the end, but had already unloaded 4 of his bottles and put them away before I got the video going (thus the need for me to “reload” the dishwasher so he could continue to unload it).
Greyson has been feeling a bit sick all week which hasn’t been that fun. For the most part he has remained happy, just not as active, running a low grade fever, and not tolerating his feeds. Ahhhh the joys of sickness. We have checked his oxygen levels a couple times and are happy that they are remaining strong. If he makes it through this sickness without using oxygen (well extra oxygen) we will be packing up all the oxygen and sending it away when school gets out. He hasn’t used suplemental oxygen since thanksgiving, and we are sure he isn’t going to need it now, so we are excited that more medical stuff is leaving our house very soon!
In other news, we learned this week that Greyson can spell his name! Well technically he spelled it G-R-E-Y-S-O-E, but he can do it, he was just getting bored by the time he got the end. He really is learning a lot and we see evidence of all he knows pop out more and more everyday.
One last “being a kid” story before the video. So Greyson has to get up at 7:30 every day for school. I know that doesn’t sound early but we are night owls and it is a bit early for us. Anyway this last weekend we were excited that we didn’t have to drag him out of bed (he always wants to sleep more) and that we could all sleep in. Well guess who was awake and trying to get his parents up and moving BEFORE 7:30 everyday we could sleep in??!! Yep the G man himself. Little stinker!

Last weekend we took Greyson to his first ever parade. It was the 63rd annual armed forces day parade. We have never been to it but learned that Bremerton has the longest running armed forces day parade. While it was kind of rainy and cold, Greyson enjoyed it and even got filmed by fox news! I watched the news and he didn’t make it on TV, but he sure was cute waving his flag and clapping for bands as they came by.

It was a busy day since we left the parade early to go to the beach (well a local beach on the sound) to look at sea critters. We found lots of crabs and even a millipede (OK I didn’t see it but Stacy showed people it and said it was a millipede. Anyway it was something that looked like that). After coming home for a bit we then headed off to Poulsbo for Viking Fest. Needless to say we were pretty tired after the weekend. This weekend we are making plans to stay close to home and relax as we are all feeling pretty tired.

Tonight as we got home from church the radio was on. When Stacy went to pull Greyson out of the car she heard him singing quietly. This is what she heard…..”Her hair, her hair, falls perfectly without her trying
She’s so beautiful, and I tell her every day” For many of you that may not mean much, but it is a popular song on by Bruno Mars that plays on the radio (apparently quite a bit!) and Greyson seems to have picked up the lyrics rather well! It is so fun to hear all the little things he has picked up and to be able to understand many of the things he has been saying for awhile now. Every day we see new ways that he is growing and learning and we are reminded of how tremendously blessed we are to have him in our lives. As the song he was singing goes on to say, Greyson

When I see your face, there’s not a thing that I would change
Cause you’re amazing, just the way you are
And when you smile, the whole world stops and stares for a while
Cause you’re amazing, just the way you are.

May 18th, 2011
Greyson has been fascinated by these glasses lately. He found them on the kitchen table one day (no idea why there were there but anyway) and now has been wearing them all the time. Most of the time he gets them right side up, but lots of times they look like this. I am also happy to report that his balance seems to be completely back to normal. Our best guess as to what happened was just that his ears got “plugged” with a little fluid and caused his balance to be off a little. Since he doesn’t have the best stability to begin with this was just too much for him to compensate for. Whatever it was it is nice to have him back to himself.

This last weekend we went to Nampa for my (Bob’s) graduation. While there Greyson got to enjoy playing with his family members and had a fabulous time. One day we noticed he had picked up a pen and was drawing on Grandma’s door. Well we love celebrating the first time Greyson does something so I gave him back the pen (I had taken it away) so I could get a picture. Now I didn’t want him drawing more on Grandma’s door so I made sure he was holding the pen in such a way that he would be using the back of the pen on the door. Well as I tried to snap a picture he “drew” on the door a couple times, then quickly switched the pen around so he had the ink end and began drawing on the door again before I could get the pen out of his hand.
Somewhere we have more pics from the weekend but for now I will close with asking for more prayer. We are confident he is fine but Greyson has something going on that is making it difficult for him with his balance. Sunday he woke up from a nap and was basically unable to walk. He would take a couple steps and fall over. Even when he would be on the ground playing if he wasn’t careful he would lose his balance and topple over. Well this has continued to today. We took him to the Dr. and hopefully it is just some fluid in his ears causing this. The Tacoma pharmacy also remade his blood pressure medicine (it has to be compounded) to ensure that there wasn’t a mess up in the making of it that was causing his blood pressure to be off.
We don’t really have good answers yet but it does seem that Greyson is walking better tonight. We will see how tomorrow goes.
One more funny story. Greyson was getting very tired in the car as we drove to Idaho (as were his parents!). Just before we got to Ontario (only about a half hour away from our destination) Greyson was done and wanted out . He kept looking out the window saying “Okay, open the door now!”. It was so cute we had to stop and let him run around for awhile.

OK so we have quite a bit to update everyone on, so I better get to it! First the medical, then the fun stuff.
We had Greyson go see the neurologist a little while ago. He was seeing one from before he left the hospital till maybe his second birthday (can’t remember exactly, probably shows on this blog somewhere!). Anyway we quit seeing him because he really wasn’t saying much (every visit he would ask what I thought, then say Greyson seems a little behind and encourage us to read to and interact with Greyson, which we work at all the time!). Anyway we felt his therapists were observing Greyson in the same type of ways and decided to make things easier on our family (and our budget) by not seeing him. Well we decided we should check in and with neurology again and see if they had anything else important to say. We found out that there was a different Dr. who came to silverdale so we signed up to see her.
Well she was very informative (spent almost two hours with us!) gave Greyson the official diagnosis of having Cerebal Palsy (Which means very little other than changing how we talk about Greysons motor issues. We have always been saying he has low muscle tone. Cerebral palsy (CP) is an umbrella term encompassing a group of non-progressive,[1][2] non-contagious motor conditions that cause physical disability in human development, chiefly in the various areas of body movement (At least according to Wikipedia!).
She also thought it would be a good idea to get an MRI on Greyson. The reasoning was that it would tell us areas of Greyson’s brain that were damaged or abnormal which could be helpful in Greyson’s therapy but most importantly it would provide a baseline of his brain. This is important because if his brain looks different and he were to suffer a head injury in the future, they would not know if things were from the injury or because of everything else that has happened to him.
I was hoping to wait till we see the Dr. again and get more information, but we can’t get in to see her till July so here is the basics of what they found. Greyson’s brain looked far better than she was expecting. He shows no damaged areas and the only “abnormal” aspects to it is that his frontal lobes are smaller than they should be and a couple “ducts” are larger than they should be. This is no doubt a result of developing outside of the womb. This “explains” his delays to some degree but also shows that there is no reason to believe that he will not continue to develop in all areas as his brain continues to grow and develop.
They ran some other blood tests to check for some other things but we haven’t received the results yet. We are continuing to press on knowing that the words of Jeremiah 29:11 are true for Greyson. God knows the plans He has for Greyson, plans to prosper him and not to harm him. Plans to give Greyson hope and an AMAZING future (amazing is my own addition, but it is certainly in line with the scriptures!).
OK so on to Easter. We took Greyson to our Easterpalooza party that our church threw for our community. It was CRAZY! We are unsure of exact numbers but confident we saw over 1000 people! Greyson went down the giant slide (22 feet!), got his hand painted (didn’t let them do his face) hunted easter eggs, and just had a great time. He had a great time.
Then on Sunday we gave him his easter basket. He got a chocolate bunny (see picture and video below) and bubbles (see final video). You really need to spend some time with him soon if you haven’t. He is doing all kinds of new things and really turnning into quite the ham.

Have I mentioned he gets excited with bubbles these days?

So we received this balloon at a bridal shower Stacy went to. Nothing too amazing about that right? Well here is the amazing part. That shower was over a month ago and this balloon is still flying just as well today as it did on the day we brought it home! That’s some balloon!
Greyson continues to say new and fun things. It is shocking when he says full phrases. Tonight I was giving him a bite of ice cream and making him open his mouth wider than he wanted to. Finally he said “All done, I don’t want it anymore”. Pretty exciting. He doesn’t always enunciate (see video below) but once you can figure out what he is saying, it is really clear.

Greyson’s teacher (well the one who has been coming to our house since we pulled Greyson out of school at thanksgiving) showed us a video of the formation of a word. It was fascinating to see how many of the things we hear coming from our kids mouths are really true words that are not coming out correctly (I know we all know this).
Well Greyson has quite a few of these “phrases” that he uses that we have NO IDEA what they mean. One I believe I’ve mentioned is “eee ga geee ga gabby”. Lately Greyson has resorted to enunciating this one for me so that I can understand what he is saying. Ironically that only works if you understand the “language”!
So he has also been saying another phrase a lot lately. Watch the video and see if you can figure out what he is saying.
Did you catch it? Well here is a hint. This is is a catch phrase for this character.

In case you haven’t deciphered it. Greyson has been running around yelling “rrrrrrrrr. rrrrrrrrrr. To infinity, and beyond!” He gets this (including the rrrrrr) from one of his toys.
In other big news Greyson has returned to school this week. He is having a blast and from the sound of it is doing SOOOOOO much better than when he went before. He is interacting better with the teachers, other students, and classroom activities. We are thrilled for him.
On another note, his school starts at 8:19AM and I need to get to bed!

Tonight Greyson was having a great time with his little dog that his old friend Ashley gave him. He was working hard to sing the song as well as actually touch his knees and toes. He cracks us up.
Earlier this week I was skyping with him from my hotel room (I was out of town for a couple days at our church’s district assembly). I was playing with him by lifting the computer so he couldn’t see me and then lowering it down again. It was so funny because Greyson would see the top of my head and try to look down into the computer monitor to see where I was. This may work someday when we have 3D skype, but for now it just made his parents laugh!