Well Ashton has a few days under his belt with his backpack. His sister took him for a walk around the block tonight and then he played for about another hour around the yard after that, all with his pack on. He is getting the hang of it pretty good! I weighed it yesterday and found that it is just barely over 4 lbs when the tank is full. There is a trade off to some degree I suppose. He has a little harder time getting up and down but he still can do it. The upside is that he can go from the front yard to the back yard. He also is able to move around without having the tubing get caught on things or wrapped around things.
Here is a little clip of him getting around. My camera is a little blurry for some reason, so sorry for that, but you can get the idea of how he can get around with the tank on his back.
Today was Ashton's last day with his Occupational Therapist as she is moving out of the state. We will miss you Judy:-( He will have a new therapist and I'm sure we will grow to love her too, but Ashton has been working with Judy since the beginning.
He has had a speech evaluation and qualified for speech therapy. Tomorrow his new speech therapist is coming to put together an addendum to his care plan and then we will start working on getting him caught up on his speech. Everyone is pretty positive that he won’t be long in catching up once he figures out the benefits of being able to communicate what it is that he wants rather than screaming until we figure it out.
He is back on oxygen after about a year of being off most of the time. We started out putting him on oxygen at night but now have moved to keeping him on 24/7. He just seems to feel better. His sats do change a little but his coloring, energy level and mood are so much better when he is on the O2 so we have decided to keep him on. I think part of it has to do with the heat also. He is usually tired in the day but then wants to be up at night after it cools down. We were concerned about him getting tangled up in the tubing at night so we requested more nursing hours. We got it, so we now have a nurse for 40 hours a week during the day and a night nurse for 30 hours a week. This is so nice to have help to allow us to get some other things done. It’s not too bad now that the weather is nice but when those cold winter months return and he needs to stay inside more, it will really be nice to not have to drag him out when running our other kids places or running errands.
This summer is the first time he has really been able to be outside much and he is just soaking it all up. He loves to play in the water and if we turn our backs too long we will quickly find him in the sprinkler. We have a 50 foot tubing on his concentrator so he can go out into the yard, but then when the kids go to the neighbors and he wants to follow, he can't follow them. This is a good thing and a bad thing. We don't want him to get frustrated and feel confined but it is kind of nice that he can’t easily get away from us. He was running out the door the other day and I had to restrain myself from stepping on his tubing to stop him:-) I don't want him to get to where he resents the O2. As I have said, it was so hard to get him to keep the cannula on. He just kept ripping it off of his face. Some of the parents told me that he would get used to it and want to have it on once he understood that it made him feel better. Well, you were right. I now catch him putting the cannula back in his nose if it comes out or he adjusts it if it isn't in quite right. I had little faith that this day would come when we put him back on. I have been trying to find a way that he could have a little more freedom, so I have been talking with Praxair to see if anything is out there that is pediatric approved that we can use for Ashton. The units they have with liquid O2 are not approved for kids as young as him. What I finally came up with today was this. We picked up an M6 tank and they found me a really lightweight regulator to go with it. I ran around to the sporting goods stores and found a hydration pack for $20 at Big5 that fits the tank almost perfectly. All together the tank, regulator and pack weigh about 5 pounds. He is on a 1ltr flow and this should last him 2.8 hours. We have E tanks we can use to take him out other places, but with his pack he can run around on his own. Ashton is weighing in at about 25 pounds so this pack is borderline heavy for him. So, we took it for a test-drive tonight and he did really good with it. I walk down the block with him, holding his hand. He wore the pack for about 20 minutes and then I took it off. He did Ok but he really needs to build a little more muscle in order to use it full time when he is out playing. I bet within 2 weeks he will be able to use it full time. Ashton is pretty solid so he will do Ok with it. His therapist said we should keep the pack no more than 1/3 of his body weight, so we are good there. It is exciting to know that there is a solution that will allow him to participate with the other kids in the neighborhood.
There are sure challenges that continue to come along as he grows and develops. I'm sure it will get more interesting as he gets into school. He has an amazing attitude that I hope he hangs onto as he realizes that some of his activities may be restricted compared to kids without health challenges. He is a good boy and we love him so much.
His newest trick as of the last couple of days is that he can now climb upon the kitchen chairs and then up on to the table. This is scary!
I tried shooting a video of him wearing his pack tonight but something didn't work so I will try again in the next couple of days.
Overall he is doing really good. He is definitely a boy. He loves to wrestle and play cars, trucks, and swords and play catch.
