Sunday, January 3, 2010

2010 and Josh

As I said good-bye to 2009, I decided things are going to have to change to make 2010 better. So here we go with the 'new' me and way of life.

See this cute boy? He has been the source of my stress for the last month. Don't get me wrong, he is ALWAYS the source of my stress for the most part, but it was like out of control, not getting any sleep stress. So while the kids were off school for the holidays, I spent a few days trying to figure out how to de-stress myself and my life. So far so good.... LOL!

Now for an update on Josh. He had an MRI done on Dec. 17th. We finally got a call from Dr. Filloux last week on the results. His words? "Well it's good and bad." I took a deep breath and said "OK". Basically his MRI came back good, with no obvious signs of big changes since his last MRI. He has a bit less space for his brain than before (from his microcephaly), but so far it's OK. There were a couple spots that were the same as before, just not quite as developed... nothing to big to worry about. The bad part? Well Dr. Filloux is concerned about what IS going on and that we still are no closer to answers than we were before. I am charting his 'off' days and what goes on when he has them. We have an appt with Dr. Filloux for him to do another exam, sit down and go over the last testing he has had done and see what we are missing, or what else it could be. He clearly has something neurological going on that is yet to be diagnosed. He still can't rule out seizures since you can have them and not show up on an EEG if he was not having them at the time. So we aren't any closer than we were before. It's frustrating to not be able to know what is going on. His off days has been more frequent in december and was very hard for me to watch. The other concerning thing has been his regression in eating. He stopped eating all together for about a 10 day stretch. Now when he does eat, he won't chew and has been just holding food in his mouth until he gags or chokes. It's been very draining on me to deal with it every. single. day. all. day. So that is part of where my stress has come from. It is also why I decided I have to make some changes to help my day to day life go smoother. Since I can't control what is going on with Josh, I can at least make the things I do easier on me.

So... to start with..... this is what my living room floor looks like every morning. This is what it takes to get him dressed in the morning. I timed it today and from the start of when I lay him down after his bath to the time he is hooked up to his pump and free to run around was 22min. It's no wonder I have smarties there for a bribe to keep him happy. 22 min in a two year old world is forever.

Now the other problem/frustration I have is his feeding pump and tubes. I love his new DOES make it easier. But just the fact of having a 2 year old on a feeding pump 24/7 has many challenges. I had been putting him in all his regular clothes, with lot's of tape to keep things in place. We had kinked tubing, pump beeping, diaper change nightmares going on. I follow many blogs with special needs kids and have noticed one thing the same about them all.... the way they dress their kids (the ones with tubing of sorts). I decided that even though he has all these cute clothes, I need to dress his conducive to tubes. One of the things I am in the process of doing is making 'BabyLegs' for Josh. They are just leg warmers that go from thigh to ankle. I priced them and was annoyed at how much they were. So a friend of mine (thanks Shanda!) sent me a tutorial on how to make women's knee high socks into BabyLegs. I am sooo excited to get started!
This picture is of the ones I am going to make this week. Using these allows Josh to wear just a onesie so there will no longer be tape everywhere.

The other thing I have done is buy long-johns... like Gerber ones and put those on and then snap his onesie over them. It probably looks really funny and he might get laughed at, but now his tube can just hang down from his tummy and there is not pressure on it to stop the formula flow. Diaper changes are also a breeze now. No more pulling off 8 layers and re-taping ect.

Now for another way I have made my life easier. I started making his formula in my smoothie blender. Not only does it work really well, but I have a handy spout to pour the formula into bottles. Nice huh? I love the time it cuts down!

Since Josh is on meds 4 times a day.... I do this every night before bed. I got cheap baskets and labeled them for the times of day we do meds. Now they are ready for me so that time is cut out during the day... and I can just grab it and do the meds and flush his tube at the same time. If I forget to grab them and am doing something like a diaper change, I can even ask Trevor or Jordan to grab his meds for me and they can. Wish I would have thought of this earlier!

And this hangs on my fridge. I no longer have to sit and wonder how long his G-tube has been in, when I need to order more supplies or what I need. I used a permanent marker (in black) so I can erase easily and re-do it as I go. No more post-its, little papers ect. around my house!

And finally my clipboard. I have to keep track of this stuff for the Neurologist and I was having a hard time doing that. So one night (in the middle of the night LOL) I got this grand idea to buy a cheap clipboard, hang it up and I could keep a record and not have to wonder where my paper is, or if I wrote it down. How much easier can it get?

So as I said good-bye to 2009, I have high hopes for 2010. I have come to the conclusion that life is not going to 'settle down' and I just need to plan that way. I know that Josh will continue to keep me on my toes with his problems, but I can make my day to day life better. I think in the long run that is what has been wearing me down. I feel much better being more organized and even though it does take effort to keep it up.... it takes effort to keep up with Josh anyway. I just apply my effort in a different way. If any of you have any more suggestions or things that you have done... please let me know!!!
I hope everyone had a great year and had an enjoyable holiday season!


Lori said...


Annie said...

Wow you are super organized! I am always amazed at how you turn hard things into positive things!

Deb and Spence said...

Way to go! You are so organized. I can't believe how great you handle everything!

Tanya said...

You rock! I love how much you've been able to do figure out to save yourself time and energy. Good for you!
And gooooood luck!

azgirl said...

Sound like you are on top of things. Good luck. You are on my prayers.

Scilley Family said...

WOW! All I can say is you are super mom. It looks like you have come up with some great ways to help your day go a little smoother. Keep up the good work. You are amazing!!!

Jessica said...

Holly cow you are orginized! I love your idea about using your blender/smoothie maker. Very cool! I thought I was cought up on ur blog but you snuck one in on me... i love how everything is set up! I might have to steal some ideas from you. All of Js stuff is just shoved in a box and i frantically search for what im looking for...your way looks much more easier! Together we will both have a wonderful 2010...Thanks for being so wonderful!

Heidi said...

You are an amazing person. You just find ways to deal with all of the trials that are thrown your way. I keep you and your family in my prayers.

Brittany said...

I think you're going to have a wonderful 2010. Good work