Wednesday, February 10, 2016
Thursday, January 28, 2016
The last few months, we have experienced more difficulty communicating with Ian, especially when fatigue has set in. This has become increasingly frustrating for all of us. We usually rise to the task and one of us can figure out what he is saying. It may just take a little bit of time. As evenings come, his "s" are difficult for him to get out. Smiles are a little harder for him. We have moved onto blinking eyes for yes. Don't worry he can still stick out his tongue. ..that's still no. He is using his eyes a lot more to look in the direction of what he is trying to tell us and then we start the guessing game. We have yet to not figure out what he wants or needs. We will continue to figure out ways to communicate and understand our little man.
Over the past few weeks, we have noticed a lot more drooling. His hospice nurse and day nurse chatted about it today. We could give Ian medicine to dry up his secretions however that increases the risk of plugs, which are life threatening to him. Increased drooling is also a sign of trouble swallowing (this is something I just learned today). Nurse T did some listening and thickening of his liquids until Ian said they were going down easier. The thickening of his liquids will hopefully make sure they go down correctly and continue to prevent aspiration.
This all has been a little hard for me to take as I was hoping we had seen all the disease progression we would see....I told Brian, stupid me....he changed it to wishful thinking. Whichever way, I look at it, I hope we don't see anymore for a while.
Enjoy your loved ones. Treasure yesterday, dream of tomorrow but live for today.
Monday, January 18, 2016
On November 17, 2015, I blogged a story written by Ian with his teacher....who would have thought that by January 16, 2016, it would have been published. Ian is a published author. Thanks to wonderful chai lifeline volunteers, Andrew Schwartz, Jared Hurwitz and Melanie Sidle...his story was put to print. We had no idea, the volunteers ran with it, from Andrew taking the lead, Melanie illustrating, and Jared putting it all together. When his book was presented to him, Ian's smile was priceless...just as is the book. The art work is amazing...thank you Melanie, you are incredibly talented. Jared, thank you for putting it all together and Andrew, thank you for coming up with the idea. One more thing which we can say Ian has done, become a publish author.
Wednesday, January 13, 2016
Sunday, January 10, 2016
Thanks to Facebook, I have been brought back to a time of 3 years ago...February 1st marks 3 years since Ian got his trache. I have been going back and reading post from this time 3 years ago...it is hard to imagine that we would be where we are now. Many different emotions run through me as I remember everything, some as if it was yesterday others as if it was really 3 years ago. The ups and downs of being in the PICU for so long, Ian being intubated and not knowing if we would be able to extubate. The back and forth to the hospital while doing everything we needed to do for Becca at home. All the while not knowing if Ian would make it or not. We just took it one day at a time.
When we trached, we thought we would get another year or two with Ian. Never 3 plus years. We have been through so much over these years, most good some bad. We always said we wanted quality not quantity for Ian and that we have gotten with the trache. To be where are is truly amazing.
We have no idea how much longer we will get with him. We will continue to look for quality as well as treasure yesterday, dream of tomorrow but live for today with the help of everyone in our village.
Saturday, December 26, 2015
Friday, December 18, 2015
So I've been posting lately but not on how we are all doing. Over all we are holding our own. Taking everything one day at a time during a very hard time of year for people with neuromuscular diseases. Many people have asked how Ian is doing...over all ok. We have seen small signs of disease progression. He is harder to understand, not in that his voice is softer, more in that he is having a harder time with certain words and letters. The "s" is the main one that comes to mind. Getting the words "side" and "yes" out have become difficult for him. I would say 5 out of 7 days he is taking a nap as well as going to sleep by 9:15 (yup that's early for him). He's also having a hard time with the loss of Joey, we are taking that one day at a time and helping him get through that.
Becca is doing well. Currently, her grades are 5 A's and 2 B's. She just had a math test and was the only one to get an A. So proud of her. Girl scouts is going well. About 3 months ago she started horseback riding, and last week she jumped for the 1st time. She was ecstatic and we couldn't be more proud of how she is doing. She seems to be handling the loss of Joey ok.
As for Brian and I, we are doing ok. That seems to be how I am describing everything, "ok". I guess when you consider everything we go through on a daily basis, we are doing ok. Can't be doing great, afterall, we do have 2 pre-teens in the house, who both have the attitudes. All the while we are slowing watching one of them die...so we are doing ok.
As 2016 approaches, we will continue to do ok and grieve the things we need to as we treasure yesterday, dream of tomorrow but live for today.