Sunday, March 27, 2016

A Full Weekend of Chai Lifeline

On Friday night, we were fortunate to have Shabbat dinner with two wonderful families, the Hurwitz's and Schwartz's (both whose sons volunteer with Chai lifeline and visit Ian regularly) along with some of the other volunteers. It was wonderful to get out and do without completely worrying about Ian. The boys took Ian under their care, played hide and seek, lots of laughter came from the rooms they were hanging out in. Both families also have wonderful daughters, who Becca hung out with and got to be a kids. As for the adults, drinks were had, food was eaten and adult conversations happened. We are extremely grateful to the Hurwitz and Schwartz families for hosting us.

Sunday morning started off too early, heading down to Arundel Mills mall for the Color Vibe run. Chai Lifeline had over 100 runners participating. Like true for nothing is done small. We danced, got colored and "walked".



Thursday, March 24, 2016

Roller Coaster Week

This week has been a roller coaster of a week for us....Monday started off with a big fatty plug and an emergency trach changed needed. Followed by Monday evening with our Monday/Tuesday nurse pulling herself from the case, another one bites the dust. Tuesday, I stayed home to play nurse. The morning started off great, as you can see from the photo below.

About 20 minutes after I took this picture, things went south. Ian oxygen levels dropped to about 78, an extra treatment was needed which helped to loosen up the secretions which were hanging out....some extra cough assist needed and suctioning and about 2 hours later, he said he was feeling better. During this extra treatments, we were talking and he said that it was hard to breath and wanted to know why this was happening. I looked him in the eyes and told him that he had some extra secretions in there we were going to get out and we would get through this episode. As for why this was happening, that is always the hard question to answer...and one I don't remember how I replied to. I do know that whatever the answer I gave him, helped to calm him down and that is the most important thing. The rest of Tuesday was good, Brian came home early from work because of the episode and we got to spend a little bit of time just the 3 of us before Becca came home from school. By 8pm, I was beat. Tuesday, Wednesday and Thursday, have been painful days for Ian. We have been able to mange them with a few extra doses of his pain medicine and a few extra naps. Hoping tomorrow is a quiet, pain free day. As well as the nursing agency finding us a nurse for Monday and Tuesday, otherwise, Brian and I will be splitting the week. 

Becca has had a good week, counting down the days until Spring Break, which starts at the end of school today. She will be spending the week home, working on her Bat Mitzvah, much to her dismay. As I have told her, it is all part of the program and everyone planning for their mitzvah must go through. She has been busy with girl scouts working on her silver award with her troop. They are planning on doing something to raise awareness of disabilities. She also has been busy working with her STEM group, making race cars out of edible materials. It has been fun to watch them build the cars, race them and collect data, along with the laughing that comes along with it. All the laughter, sometimes, makes me dream about the what if's. I am just grateful for her friends that keep the laughter coming.

As for Brian and I, we are doing well. We are deep into the planning of the kids B'Nai Mitzvah which will be here before we know it. Brian has been busy with taxes, well on and off, and had a little bit of time to get out of the house. I have been busy taking care of things while he has been doing the taxes and look forward to getting out of the house in the next few weeks with some friends. We have had a little bit of time for each other, usually, late at night after the kids are in bed and the nurse has arrived...but that is just how it goes in our home. We spent the few minutes right before we fall asleep with each other.

Treasure yesterday, Dream of tomorrow, Live for today!

Sunday, March 6, 2016

Out and About With Friends

Just like any pre-teen, Ian got to go out and about with friends today...first time without mom, dad or a nurse. Thanks to Chai Lifeline, Ian got to go to the Baltimore Aquarium...he was so excited that all day, he wanted to know when it was his turn. After all, he sees Becca going out with her friends all the time. Even this morning, she got to see her going out with her big sister, Rachel. So after, many text messages back and forth trying to coordinate everything...Ian's counselor, Danny, and his big brother, Jared showed up to the house. Ready to go to the aquarium....into our van they went and off the went.

He came home all smiles, actually all 3 of them did. It was priceless to know he was just like other boys, hanging with the boys.  A huge thank you to Chai Lifeline, Danny and Jared....we love you all. Thank you for being a part of our village.