Terrace's blog

Visit to Pittsburgh Children's Hospital

Mark had a checkup Thursday the 27th. Overall it was a good day. We had good driving weather, was on time, and testing went well! They added blood work at the end of the day but even that went good, they got Mark in one try. His chest X-ray and pulmonary function tests came back about the same as before so they haven't got worse. The doctor did state that his pulmonary function tests really don't have much room to get worse though. ☹️ Now all we have to do is wait to hear the results on his blood work. On an inspiring note, a girl about Mark's age just recently had her lung transplant and is home running around! The doctor said Mark and her were back and forth for lungs so hopefully Mark's will be soon. (I think, it's a rough decision). They want to see us around September to do more testing because Mark will be turning 12 in December and that puts him on a little different of a list which may get him lungs sooner. This is assuming we don't get a call before then.

Wednesday Morning

We were doing Mark's medicine this morning as usual and not sure where his comment came from but maybe it had something to do with stopping in at the hospital on the oncology floor this week to drop off the sunshine station bags that were made at the spaghetti dinner fundraiser by the kids that came to the event. They were filled with fun stuff for all the kids on the oncology floor and the kids that come in for the clinic. Mark has spent many days on this floor. Anyway, as we were in between inhalers Mark leans over and puts his head on my shoulder. I asked him what was wrong and he said nothing, I just wish we had a normal life without transplant. I waited a few seconds and told him we will soon and he said yes but we don't know when soon is.

Spaghetti Dinner Fundraiser

This past weekend was the spaghetti dinner fundraiser.  It was definitely a success!!  Team Mark worked very hard and everything was amazing.  There were so many raffle baskets filled with some awesome gifts.  We had just enough spaghetti and no leftover desserts!  We actually had 3 cakes, brownies, pies, cupcakes, cookies, and donuts.  I think the only glitch was that it took about 15 minutes to get some more noodles cooked, other than that things went perfect!  My best friend made an awesomely huge banner that gave all the information about the prices of tickets, the raffle, and the 50/50.  It also had some really cute pictures of Mark on it.  I can go on and on, the man who ran the photo booth was fantastic and Dr.

Mark's Friend Frankie

I received a text yesterday from an amazing family.  It just so happens that they have two daughters, one is friends with my oldest daughter Brittani and the other is friends with Mark.  This family will always hold a special place in our heart.  They have been so supportive and have hearts of gold!  In this text the mother stated that their youngest daughter Frankie held a fundraiser with a couple of her friends at their school for Mark.  They sold slime which my other daughter Alayna has told me is something everyone is loving right now.  Anyway, they had a very successful fundraiser and wanted to purchase the chrome book that Mark is going to need for school.  This will allow him to do more of the same things that the rest of the kids will be doing in his grade and help keep him in the loop of what is expected of kids in his grade since this is now the 2nd year Mark has been unable to attend school.  I just am so lucky that my children have

The Windsor Benefit Weekend

I just wanted to send a special thank you to Rick, Mary, and the entire Windsor Pub Staff that opened up their hearts to host a special fundraiser the weekend of January 27th.  Country band Anything Goes, Larry Alltop, and Average Joe all played that weekend.  There was also a game of Name that Tune played on Sunday as well as a silent auction.  I was able to make it on Saturday evening and had a really great time.  There was family, friends, and many sweet people that made it out to help support COTA and Mark.  A few people had came up and introduced themselves, said some kind words and made the evening extra special.  I was fortunate to meet Rick and Ashley who had nothing but the nicest things to say.  There was one man that had came up to me and just made the biggest impression.  He didn't have any words to offer but the look on his face said it all.  He just gave me the most heartfelt hug and for some reason this man who I don

"Baby It's Cold Outside" Fundraiser

January 2017

Mark's amazing volunteer team has been working hard organizing and planning future events.  I'm looking forward to this weekend to the "Baby it's Cold Outside" fundraiser located at the Basement in Sagamore Hills.  I think it will be lots of fun and honestly I could use a night out!  Mark had started a pretty regular cough a couple weeks ago.  I had called the doctors and let them know what was going on.  His pulmonologist here in Akron decided to give him a 5 day burst of steroids which in return gave Mark a much longer burst of energy, emotions, irritability and lets not forget a huge appetite!  She also recommended him to do his inhaler every 2-3 hours and use 4 puffs not just 2.  Luckily, this seems to have solved the coughing issue!!  We are lucky to have such an amazing team of doctor's that take care of Mark. 

Happy Holidays!!

Hope everyone had a Merry Christmas and a Happy New Year!  We were very thankful to be able to spend the holiday's at home and with all of our family.  Mark and his sisters were able to spend Christmas Eve with their dad and he took them out to look at Christmas lights around town before he brought them home.  Christmas day the kids went with their dad to his mother and father's in the early afternoon then that evening his dad brought them home and all of us went to Uncle Dave's house where all of Mark's mother's side of the family gets together.  There is lots of cousins, aunts and uncles.  My guess is that there is about 30 - 40 of us.  For New Year's, Mark's Aunt Cassandra had us over and Mark was able to spend the night.  It was a great Christmas break and now we are trying to get back into our regular routine.  That part isn't near as much fun!

Gift Wrapping Station Fundraiser

So much support for Mark and COTA was given.  We had three dates that Marks awesome team of volunteers worked the gift wrapping station at Summit Mall.  I was only able to be there one of the days but I can say it was a really fun experience and I wish I would have been there for all three dates.  I want to once again thank those who put their time in, those who stopped by and saw us, those who donated boxes, ribbons, tape, money, etc.

Mark's 11th Birthday

My little man whose not so little anymore turned 11 on December 5th.  I had been sick and his sister had to work so things didn't go as planned but I think things turned out just fine.  We surprised him with a Dairy Queen ice cream cake with The Flash on it, I made tacos for dinner which he requested, had a couple gifts for him to open, and rented the new Ghostbusters movie.  Mark was able to stay with his dad on Sunday and Monday night which always makes him smile!  He talked me into ordering a stuffed turtle from Super Mario Brothers that he's been wanting and luckily his cousin Lily was able to come over yesterday to stay the night with him.  I guess celebrating all week is better than just one day! 






 
 
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