*Don’t forget to play video left click on it to select, then right click and choose play. If you don’t see the video you may need to install adobe flash player.
Stacy called me back to our bedroom last night and at first I was worried something was wrong. When I walked in she said,”watch him”. Well this video is what I found. Greyson is big now on grabbing things that his hand finds and putting them in his mouth. I’m not sure if this was a good idea but he sure enjoyed chewing on his cuff! It was quite comical.
So I know I haven’t posted in a couple days, but what can I say? Greyson continues to be a pretty normal kid (with quite a bit of baggage!). Today we went and saw the pulmonologist and had a great visit. He seemed very pleased with his progress and we came away ready to take the next steps. First, they gave us a passy-muir valve to use when Greyson is awake. This is a basically a one way valve that goes between the vent circuit and the trach. It allows the breath from the vent (or air if he’s off the vent) to go in but prevents it from going back out. This means all of the breath has to be exhaled through the mouth or nose. Why is this important? Well the trach is located below the vocal cords. As I’ve commented on before when the cuff is up (or full) not much air can get around the trach When the cuff is down air can excape and Greyson makes some noise. Well with the passy-muir valve all the air goes past the vocal cords which means Greyson is a lot louder and can make noise much easier. It also alows him to cough and sneeze out his mouth and nose. After we put it on him he couphed a couple times and startled himself (it feels different to him with this valve). He got scared and started crying. Stacy and I were laughing so hard because it was such a different sound than we have ever heard before, even when he was off the vent in the NICU. So that is a pretty cool thing.
They also changed a vent setting so now Greyson determines how long his breaths will be, instead of having to take the breath the machine tells him. This is a minor change but should be nice for Greyson’s comfort with breathing. We are also beginning to wean him some more off the ventilator. He has been at 15 minutes twice daily for a couple weeks but now we are increasing his time off the vent by 15 minutes twice a day until we get to 3 hours twice daily. Yep, that’s 6 hours a day total off the ventilator! This is very exciting news. Of course this is dependent on Greyson doing well but we see no reasons at this point why he wouldn’t be able to handle the increases everyday.
The final thing from today was that the Dr. said it would be OK to start working with a therapist and have Greyson start taking some food by mouth to get him ready for the swallow study. In case you forgot he needs to have a swallow study done in order to see if he can eat by mouth safely. In order to have the swallow study he needs to be able to take 2 oz by mouth. Well we don’t know if he can take 2 oz by mouth since we don’t give him anything by mouth because we don’t know if it’s safe till we have the swallow study. Can you see why this gets complicated fast? Anyway now we have permission (from a real Dr!) to begin working on this.
We also learned today that Greyson is now 18.4 pounds and has grown longer. He is also getting a big head from all his fans (OK maybe that just means his head has grown too, which is good!).
My,my,my he is soooooo handsome! I loved hearing him on the video it was strange to actually hear him! I am so glad to hear that he can finally start trying to eat now maybe now he can actually breast feed! I know God has his plan for Greyson and I believe that he will do fine! He is a big strong boy ready to play some football or Wii with daddy! Good job on all the great news! I am going to call this week and come for a visit with you i can’t wait to meet you 3 especially Greyson!! : )
I loved the video, Bob you are getting better with the video taking, I love it. Greyson you are so ready to get off that vent, I am so excited for you. How fun it will be for you to to taste your food as well. I know your mom has been letting you have flavored chap stick on your lips so you know some tastes. Wow from 1 lb 9 oz to 18 4oz that is so great, you are doing so good. It won’t be long until you will be doing lots of new things. I can’t wait for a video of your new voice now, I’ll be calling again and we can have a little chat. I couldn’t wait to hear the news from the drs. office, I just knew it would be good. Take care all of you and don’t stretch out that trach cuff too far. Love ya
Congratulations Westfalls! What outstanding news. It is so wonderful to hear of all your progress. Hopefully we can have a visit soon. You are in my thoughts and prayers.
How exciting! It’s hard to believe looking at the pictures when he was first born til now. What an answer to prayer. He is thriving. Praise God and how exciting for Greyson to be able to taste food and to be 6 hours a day with out the machines. What a difference for you all. You are still in my prayers. Thanks for the video. He is so cute.
Love you
Aunt Nana
Wow, has he gotten big!! It is exciting from a therapist’s perspective to see him holding that cuff and putting it to his mouth with such ease. He is such a little trooper, not to mention cute as a button. Thanks for sharing the clip. I am excited about all his progress and he continues to be the center of our prayers. I would like to come meet him this summer and hopefully we can get something set up soon. Have a wonderful 4th of July.
Karin
Yea for all of you! What a big day! We loved the video and especially loved hearing Greyson’s voice! We can’t wait to come and chat with him! Thanks for the video and the update! We so look forward to our Greyson Chronicles everyday and are quite sad when there is nothing there! We love you !!!!!
Boy are we proud of the Westfall’s. It has taken all of you to get to this point. What a wonderful doctor visit! It will be so fun to be off the vent for such long periods of time. What a blessing. Our hearts just melted watching the video and hearing you Greyson. Looks like we have to get in line for a visit or maybe we will just cut in line like they do a school sometimes. Love you all so much and wishing you a fantastic day. Hugs…Gram and Papa
Greysons video made my day! I miss my little guy so much! I miss you guys too 🙁 It sounds like he is doing great! Ill come visit you all soon once school is out of my way. Im a gluton for punishment- not sure what I was thinking taking 4 classes when were only supposed to take 2. Take care and talk with you guys soon
I keep going back to this one and it just makes me smile everytime I look at the video. I could watch it all day! Love Gram