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Showing posts from January, 2017

PEG Update

I'm not really sure if I should say PEG because that's probably NOT going to continue to be the name (LOL) One of the parents I met didn't care for the name, said it reminded him of a pirate's peg leg (LOL) That started a discussion with everyone at the meeting about whether we liked the name PEG or not. During the meeting as well as dinner that night there were some great discussions about names. Some even came from family members that weren't there! It's amazing what people can come up with when working together! Maybe the next time I update I'll have a different name for it :)

What can I say about the meeting and the experience?? For me it was a fantastic experience. The ride from the airport was beautiful. The buildings in the area just amazed me. When I checked in I had a wonderful gift of local "snacks" to enjoy.  Paul Mazur, a project coordinator, thought it was be wonderful to get get some local goodies for us all to enjoy. What a wonderfu…

Saturday Catch Up

Tomorrow is the BIG travel day! I'm still excited and nervous :) Today has been spent somewhat busy trying to prepare. I had things I needed to get done and didn't want them waiting for me when I get back (LOL) I needed to do Zachary's FAFSA paperwork. That didn't take long, but Brianna was trying to play with me by pushing on my chair, so I had to slow down and make sure I didn't make any mistakes:) We had a few things to do in town this morning and then stopped to pick up a few snacks. Issac is having his FIRST sleepover here at the house tonight. He spent the night with this friend a few weeks ago and he had the BEST time. He's never gone to a sleepover other than my mom's for a few days. It's been nice for him to be occupied while I was busy working on my list.  Here's a picture of one of the things they decided to do.

 I've been doing laundry, made spaghetti, cleaned off the computer desk and the kitchen counter. Now I have to put away that…

Thankful Tuesday

I'm a day late posting for Thankful Tuesdays (LOL) I was up and out yesterday early and by the time I got home I never thought about it :( I have one huge thing I'm thankful for right now. I'm so thankful to have my van back. I realized I hadn't driven since June!!! I don't mind being without a vehicle for a while, but then it becomes very hard. You need to run and get milk, but you can't because you don't have a vehicle :( I'm also hugely thankful for Zachary who has learned so much in the mechanics field. I'm thankful as well that he can step up and do what his dad might not be capable of at the moment. I guess that ended up being more than one thing to be thankful for :)

Rare Disease

Last year was the first year we attended Rare Disease day. It was a wonderful experience and I'm so thankful to have gone. The more I talk to people the more people I find out that have a rare disease. It happens in so many families and some never get answers.  They just came out with the video for this year and I wanted to share it!

2017 Video
You can go here to learn more about Rare Disease Day.  I heard about running 4 rare a while back.  I think it's amazing that people would go out and run for those that can't.  I would love to be able to go and watch one day!  You can check out  running 4 rare as well as their facebook page.  

#Running4Rare #RareDiseaseDay

One week until Boston!

At this time next week I'll be in Boston. It's been on my mind so much lately. I've never flown alone, I haven't flown period in probably 10 years and I am not the outgoing type around new people.  All that said I couldn't not go on this trip. We have waited almost Issac's entire life to find out if he had a syndrome or what was causing some of the issues he deals with. In the short time of the Undiagnosed Disease Network being opened at Duke we got some answers. I want to be involved with helping others that are and will be going through this process.  I will be working with this Participant Engagement Group for the next year. I'm anxious to see exactly what we'll be doing.  While looking at the Harvard UDN site the other day I ran across some of the things that have come up for us this year. It still makes me cry to read and watch these. I'm so thankful for what we know and yet we really don't know much. I'm thankful for how much Issac has…

Thankful Tuesday

I think I'm going to start posting on Tuesday's about what I'm thankful for in my life. There are so many things to be thankful for, but I've realized I get bogged down and honestly don't speak about the good in life.  When I was trying to go to sleep last night Thankful Tuesday's came into my mind and I decided it would be a great thing to do. I'm thankful for several things today!

I'm thankful for my dryer. I think most moms or even ladies in general can understand this. I may not do laundry every day, but I have the ability to if I chose too. Friday I was doing my first load and when I went to remove it from the dryer I realized it wasn't completely dry. It didn't really mean much to me, so I threw it back in for a few moments. It was then that I realized it didn't sound right :( When I opened it up I realized the drum wasn't turning. I knew instantly we had an issue (LOL) Carl tried to take it apart, but wasn't able to do it alon…

Weekly Recap W/E 1-14-17

This was one of those wonky weeks! I couldn't seem to get motivated for some reason.  I think it might have been the snow. Yep, we'll go ahead and blame it on the snow! (LOL) I love snow and the few times we do get it I feel like sitting in front of the fire reading a good book. I think since we still had some snow/ice on the ground Monday I just didn't feel like jumping into school (LOL)

It continues to amaze me every day how well Issac is reading now. At the end of last year he couldn't read the directions for his school. Now he has no trouble reading the directions and for the most part completely his work. Now we are trying to transition into him not needing to have me sitting right there beside him. For all these years I've had to sit with him, read everything to him and do most of the writing. I think he's still in that mindset and doesn't see that he can read it all himself. He's doing all the writing as long as it's not long. We recently wen…

Charleston Bending Brace

Issac has had his Charleston Bending Brace for one week tomorrow. We were suppose to start out wearing it one hour the first night and increase one hour each night. Friday night we put it on him and he wasn't very happy :( He was hitting the brace and it honestly made me think of a little child (LOL) We were going to let him wear it and watch tv for an hour, but he fell asleep. I tried to wake him up, but pretty much once he's asleep he's out! I figured if he woke up and took it off during the night it wouldn't be a problem. He slept the entire night with it on! We checked him like we were told to make sure there were no problem areas where the brace upset his skin. He didn't have a single mark on him. When we picked it up they told us that a body sock was suppose to be ordered, but didn't come in. We go back Wednesday for them to check and see how he's doing and we'll pick up the body sock then. Right now he's been fine just wearing it over a t-shi…

Review of

I have had a membership to for well over a year. It was one of those things I thought sounded wonderful, so I signed up for. Then I kept meaning to go check out what they offered and I never did. I didn't want to cancel because the monthly price was so great.  When I was preparing school this year I made myself go and look around the site. I really only looked at the electives because I needed one for my daughter that is a freshman. I found the Logic class and decided to go with that. She was insistent that she wouldn't like the class and it turned out to be her favorite last semester. It was the class she did first every day. I recently was invited to review the  Yearly Membership of for a period of time. I was very excited because I realized that now I would make myself spend more time on the site. Previously it had been one of those things on my list to do, but just kept not being a priority. I am so thankful for the chance …

Today is such a beautiful day!

I went outside to take the dog out this morning and I thought the world just looked beautiful! There is still snow and ice on the ground from the winter weather we got on Friday.  I love winter and I love looking outside to see snow on the ground and it being so bright outside. As a child I remember hearing that we might get snow and looking out the window first thing in the morning to see if we got the snow. Even though I'm not a child anymore there is still something so magical about seeing those snowflakes! Maybe it takes me back to when I was a child or maybe it's just the fact that everything seems so calm when it snows. Here are a few pictures from the house this morning:

When we hear that snow is being called for we always make sure we get marshmallows! When you have a nice roaring fire nothing seems better than roasting marshmallows (LOL) We have plenty of wood to keep the fire going and now we are venturing out for our first trip since Friday. We'll see how long i…

First Week of January Ramblings

Life never seems to go as we expect or want it too! The first week back from Christmas vacation is just as hectic as any other week.  We started out really well on Monday.  Issac had a really great day with school.  He had no issues with his siblings, knocked all his work out and was done around 1:00. I explained to him that he could do that every day if he didn't let his emotions get in his way (LOL) Tuesday didn't go as well for him. He had a really rough day and kept telling me he just didn't feel like doing school. Instead of trying to fight it and make things worse we put up the books and pulled out the microscope. For Christmas I had ordered him a set of these slides from ebay. We looked at those for about an hour. He is very into geography, so we also played Five-State Rummy and that was fun.

We had a 4-H meeting on Thursday morning and were suppose to go to our monthly craft class that afternoon. Zachary was scheduled to have his wisdom teeth removed at 5:00 and t…