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Wednesday, February 10, 2016

Welcome to Our Mischief Child

Meet Caddie. We welcomed her into our family on Thursday, January 21, 2016. She has added something back into the home which I am not sure any of us realized was missing. As Joey, aged, we lost a lot of what we have gained back from Caddie. She is 3 years-old, can be timid around new people however, when she is comfortable with you watch out. As her comfort level with our family has increased, we have seen her mischievous self come out. As the last photo shows, the adage "my dog ate my homework" could hold true. Thank goodness it was not homework she really ate but we are starting to learn, Caddie thinks if it is on the bed or in her reach it is fair game to start chewing on. We are looking forward to many more moments with our mischievous Caddie. 


Thursday, January 28, 2016

Communication and Swallowing

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

A Published Author





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

Medical Update

Ian is doing well....we have seen small changes. Ian has been sleeping a little more, some days he has been napping but by 9pm he is out for the night and sleeping through the night. Yes him sleeping through the night is a good thing, him taking the naps and being asleep by 9pm, not so much...those are some of the changes. 

The past few times we have been taking Ian out on the inline humidification system, he has had some problems. He has gone into mild respiratory distress, needing a little bit of oxygen and some puffs of his inhaler. After the last time, I called his pulmonary doctor to look into vent setting changes as the last time settings were changed was about 6 months ago and it was because he was having some mild respiratory distress on the inline humidification.  At the time of the phone call a few minor changes were made. Today, Ian went to see his pulmonary doctor. Overall, it was a good appointment. We discussed that we have seen a little bit of improvement since the changes last week. We talked about increasing his settings some more but needed to check a few things before deciding on what needed to be changed. His carbon dioxide levels was a little high at 57, oxygen level was 93 and heart rate was 117, all the while he was sleeping. They would have liked for the CO2 to be lower, the O2 to be higher and his heart rate to be lower. So with his numbers being what they were more settings were changed on his vent....as we were making the changes all of his numbers were being monitored and the CO2 went down, the O2 went up and the heart rate went down. It was amazing to see how just a few changes could help with all that. Ian slept through most of the appointment and when he woke up, his doctor asked him how he felt and he said good. His pressure control was increased to 16, pressure support to 10, PEEP of 6 and breath rate is 12...all of this means that the vent is taking deeper breaths and more breaths for him. This means some more disease progression and he is not able to take as deep of breaths as he used to or expanding his lung as well as he used to. We will continue to monitor him on the new settings and see how he does.

All of this just reminds us to treasure, dream and live.

Sunday, January 10, 2016

Trache Anniversary

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

Mitzvah Day

On Friday, December 25, 2015, Becca, Brian and I joined hundreds of others at one of the sites for mitzvah day. The mitzvah rooms offered dozens of fun and meaningful volunteer projects hosted by community groups benefiting those in the Baltimore area. We participated with Casey Cares in rolling pajamas for hundreds of critically ill chiller who are in local hospitals. Casey Cares mission is to provide ongoing, uplifting programs with a special touch to critically ill children and their families. We have been one of those families for the past four years. While we can't participate in many of the programs, they find ways to bring some things to us in the home, such as movie and pizza night. We hope the little bit we did yesterday lets them know how important they are in our lives. Thank you Casey Cares for all you do.


Friday, December 18, 2015

An Update

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.