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 wonderful way to start off this group with goodies and a sweet note welcoming me! I do have to say I ate almost all the chocolate items and brought everything else home. Issac and Brianna tried the Salty Oats Oatmeal Raising cookies from kayak cookies and Brianna is now insisting that we need to order some :) Emily Glanton was huge in making these last few days go smoothly for us as well. I'm not sure that anyone could have taken better care of us than these guys. 

The meeting had us meeting SO MANY NEW FACES! Our genetics counselor was there, a site coordinator from Vanderbilt, several doctors and many, many people that are just part of the UDN, Undiagnosed Disease Network, program.  These are a few of the people that we got to spend time with.  Isaac & Alexa

Isaac & Ingrid

Kelly

Anna

Ingrid and Alexa were with us the entire meeting and they were so truly excited to hear our thoughts and find out how to reach out to new families.   I've never participated in anything like this before, so I wasn't sure what I could do.  Ingrid asked us what could we each contribute to the group. In my  head I was thinking I don't know! What can I contribute?? There were so many things that people had in common and yet such wide spread differences as well. One of the dads has created a wonderful resource to help other parents in dealing with insurance companies, fire, police, etc.  I think what he has created can and will help SO many other parents in similar situations! One thing that I didn't quite expect to feel was how different our situation is to most others. I have a dear friend that has several children that are medically fragile. I've heard all that she deals with, but yet that's not our daily life. Most of the parents I met deal with very similar situations on a daily basis.  It was really hard for me to relate and made me wonder if I was right for the group! I honestly had not thought about that part of this journey! What is rare? What does it really mean?

rare

/rer/

adjective

1. (of an event, situation, or condition) not occurring very often: "a rare genetic disorder" synonyms: infrequent, scarce, sparse, few and far between, thin on the ground, ...


All of our kids and the patients ARE rare, but yet they are all so different. I've always felt that when people look at Issac they don't see anything "different", "rare", etc.  Beyond Issac's size and facial features I think most people look at him as an "average" kid. I wouldn't call him medically fragile, but yet we have still faced many of the same situations these families have. When you look at a doctor's visit summary we have half a page + of things listed that Issac is dealing with. We might not be able to truly understand the feeling of having your child hospitalized multiple times, but yet we can understand searching for years for answers. We've known for almost 10 years that something was "different" and going on in Issac's life. We do have some answers now after spending a week at Duke and yet in some ways the search is still going on. We now have to learn what our information means. We've wanted answers for years, but yet in some ways we still don't have much.   I've gotten to the point where when we test I'm not counting the days for results. I think after you don't get answers for so long you start to feel that way. When we do gets answers now I'm excited, but currently those answers don't change our life. At some point we may get information that will change Issac's future or we'll need to plan differently, but for now our current plan is working. 

As one parent said we are now a club and it's nice to be in that club with others that understand. I'm excited to be able to reach out to others and help them digest the information they get. Even if your child doesn't have the same gene, syndrome, disease, etc. every parent still wants that person that can understand them in a way that many of their friends and family members can't.  

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 pile of papers I took off those two places :) One of the biggest things is that I need to make sure I have my reading material for the plane :) I can't imagine what I'd do if I got there without it (LOL) I'm super excited because my favorite magazine is The Old Schoolhouse The magazine went digital and I'll be honest I haven't read it as often :( Once a year they print a HUGE edition and send it out. I'm always so excited because I'd just much prefer to hold the magazine in my hand. Mine arrived two days ago and I decided NOT to open it and save it for the plane ride. I also got a book in the mail today to review that I think I'll take. Sensei Po, the kid's sensei, also lent me a book on Green Berets. So many choices, so I'll just take them all :) I'm hoping to update after the meeting on Monday, but not sure if I'll get a chance too before the dinner. If not, I'll try to post an update on Tuesday.

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 grown and how much I know he'll continue to grow. Just thought I'd share these with you all.

Issac's page

Channel 5

Issac's Gene

Our Team

Channel 11

Publication

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 alone. I can really see the difference his accident has had on his daily life once again :( When Zachary had time yesterday he took it apart and was able to get the information Carl needed. He called a local shop and they didn't have the part, but recommended another shop. Thankfully they had it, so Carl went and got it. Zachary put it together last night and I was back in business. I guess I have a few things to be thankful for regarding the dryer! I'm thankful for a husband and son that can do things like that as well as being thankful for the dryer itself :)

I'm thankful for my kids health. I often think about all that's going on with Issac, but honestly he's in better health than some. We don't require feeding tubes, he can talk, walk and isn't dependent on anything to help him move. I guess it's all how you put it in perspective. Yes, there are issues in Issac's life and some may follow him his entire life. I know those that have children with additional needs are still thankful as well. There is always something struggling more than us and we can always find things to be thankful for regarding our health.

I'm thankful for forgiveness!  In my reading this morning it was all about forgiveness.  When bad things happen to us we are going to be hurt and it will be hard. Yet, forgiveness is amazing. If God didn't forgive me for all the things I have done I can't imagine how life would be. Life is hard, but it could be so much worse without God's forgiveness.

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 went back to Occupational Therapy for a short time and it was amazing how much his writing improved. One issue we are having is that he believes he can write and therefore doesn't need to practice (LOL) Something we are working on.

We are finishing up A Child's Geography and Issac has really enjoyed this. He didn't like doing the postcard activity they had though. I'm not sure if it was needing to recall what he learned, writing or something else. We also just started a geography note pack from In The Hands of a Child and I'm hoping Issac will enjoy that.

Zachary starts back school this week.  He's taking two computer classes again this time. It's so amazing to think that he will be 18 in a few weeks and graduating in 4 months! I just don't know where the time has gone. I miss that little boy that he was, but I see what an amazing young man he's growing into. I couldn't be more proud of him.

I wish I could post a picture of Brianna on here, but she's at a stage where I'm not allowed to post pictures :) She's just a beautiful young lady! Sometimes it just amazes me that she is my daughter. She has such a strong personality and I know she's going to go far in life. She will never let anyone run over her or drag her down. I can't wait to see where life takes her.

I've been reading a few interesting books this week. I've been reading  100 Days of Real Food and it's been very interesting. I tend to zone out sometimes when things get to technical (LOL) I love that this book has tons of recipes and to me that is much easier to relate too! We had two of the dishes this week for dinner.  I made the Southwest Chicken Wraps which we really liked. Next time I'll drop the cayenne and chili powders just a bit for Issac and I.  I also made the veggie pancakes.  To me they were a bit bland. They were also suppose to be pan fried, but since I was making a double batch I did them on a broiler pan. I think I'd make them again, but add additional seasoning.  Carl really liked them and the kids seemed to as well.  I finished The Food Police last night. I really had to push myself to get through that book. It just seemed to me that the author was knocking all ideas of organic and eating well. I think his main goal was to say that we don't want to lose our choices.  I think everyone agrees about that, but I took away that he feels by making certain changes that most feel would be good would actually be harmful because then we'd have no choices.  He also repeated that food costs are at the lowest here in the states. I just have a hard time believing that food costs are higher now than 40 or 50 years ago.  I think for most people the food budget is second to a mortgage or rent. It was an interesting read anyway you look at it.

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-shirt. He's complained the last few nights, asking how long he'll have to wear it. I didn't want to tell him that my guess is he'll wear it until he stops growing. I figured no specific answer at this point was probably best.  Last night he really had a hard time. He was begging me to let him not wear it. I insisted and he finally let me help him put it on.  I snapped this picture of him.

He's usually happier in pictures that I take of him.  He was asleep within five minutes though and slept all night. I think it's just the act of getting the brace on because it's hard for him to move or turn over in the brace.  I'm thinking I might start letting him not wear it one night a week, but not sure if that's a good idea to start that or not. I've also thought of some type of reward chart to help now. Maybe he can rent a game or something after wearing it a certain amount of days.

Review of SchoolhouseTeachers.com

I have had a membership to SchoolhouseTeachers.com 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  SchoolhouseTeachers.com 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 to review the site because it's truly full of hidden gems!

I decided that I would try to find several things on the site that I would spend some time reviewing. My first thought was to go back and pick another elective for my daughter. Since she enjoyed the Logic class so much I figured I'd go back for a second elective.  After looking around a bit I chose the Social Justice class. It seemed to me to go along a bit with the Logic class she just finished.  I read the class description and watched the introductory video. I was immediately interested myself.  The teacher, Kurt Hoffman, wrote a book titled Young Heroes that he uses for the class.  Mr. Hoffman has set the class up in a very interactive way.  He's included videos, pdf files from his book and well as lots of activities for the student to learn more about themselves. He's very encouraging and wants the students to learn about their world and most importantly themselves.  He is very open about himself and starts the class off telling the students that he didn't do well in school.  He struggled when he was younger, but now has three separate degrees.  If I had anything negative to say about this class is the price of the book. I personally wanted to purchase the book because I felt the entire family would benefit from owning the book.  The price just wasn't affordable at this time. That doesn't stop anyone from taking the class since he's included all pdf files that are needed. I'm reading the pdf's and doing the work alongside with my daughter. I think it's giving us a chance to learn more about each other.

I also spent some time with the High School Planner and printed quite a few things from it.  We have a child graduating this year that has already started at a local technical college. Our middle child, the one that is a freshman, may go on an entirely different path. I want to make sure I'm planning for everything with her, so that our bases are covered. I printed the following papers: College Planning & Prep, Possible Future Plans, Interest & Career Ideas, Financial Aid & Schoolerships, Sample Course Schedule for College Bound Students, High School Plan, Community Service Record & Books Read This Year. This is just a fraction of what they have. I believe there were 400+ pages in the High School Planner Alone. I plan on having a notebook just for our freshman and keeping these pages in there. That way I can always know what classes she's taken and what she still needs to take.

One of the things that I really, really love is the Monthly Menu Plan that is on the website.  I know I often make the same things because they are quick, easy and cheap. I look on websites to get ideas, but often end up not bothering because it just seems so simple to continue to make the same meals. On the monthly menu plan there are meals planned for every day of the month. You can click on the link and it will open up and show you the directions.  Here is a sample from January 12th What I really love is that you can pick and choose. You have access to the meals from every month, so you don't have to just use the ones from January.

I also checked out Schoolhouse Expo Video Recordings which has always been a favorite of mine. Several years ago I attended my first Schoolhouse Expo and I was hooked then. There is always a specific topic and you receive lots of wonderful information on just that topic.  It really helps when you are struggling in a specific area and you get to attend and listen with so many other moms that are in the same place you are. There are quite a few topics to choose from: marriage, reading, homeschooling high schoolers, etc.


In mid-January,  SchoolhouseTeachers.com is having a price increase. The promotion is to LOCK IN NOW at the $9.95/month rate so that you save 50% on the NEW prices. In about a week and a half this same monthly service will be $19.95/month--approximately twice as much!  Join during SchoolhouseTeachers.com's Super Christmas Sale and Save!
Use Code:CHRISTMAS for $9.95/month or CHRISTMASYEAR for $90/year.
50% discount on upcoming price increase ends: 15 January 2017.  I highly recommend you check it out: Sale

There are tons of reviews over at Schoolhousereviewcrew.com so I would highly recommend you heading over and checking them out.  It's always nice to be able to read what other parents feel about a curriculum after they've used it.

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 it takes for the car to warm up :) I hope this won't be our only snow for the year. It just puts me in such a wonderful mood when we have snow :)

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 they were calling for bad weather Friday. Since Carl still has trouble with the arm he injured there are some things that I just need Zachary to do for me. We came home after 4-H and he did the things I needed him to do.  I was getting nervous about his wisdom teeth removal because our regular dentist was doing it and he wouldn't be put to sleep. It went so well. He had some pain that night around 10:00 and otherwise he's done good. Yesterday he was up and about and basically in NO pain. Today he's cleaned his room, done his laundry, fixed the dog fence and walked to his girlfriend's house TWICE. Hopefully he continues to do well. I think this is another example of how much he's like his father.  Carl had a root canal about 15 years ago and went on to work after it was done. I've also seen him get a tooth pulled and then went on to work.

We went to pick up Issac's Charleston Bending Brace yesterday afternoon. It looks so big and bulky that I immediately wondered how he'd sleep in it. They suggested that we do an hour the first day, two hours the second day etc. We put it on him last night and he hated it. It looks very strange and like it doesn't fit. I imagine it's because they are trying to make his spine go the opposite way of the curve while he's sleeping. He was in there saying he couldn't turn around and hitting the brace.  I went in there right at an hour to tell him he could take it off and he had fallen asleep. He slept the entire night with it on! This morning we checked him out and no marks, so apparently it fits well.

We woke up to a nice, small amount of snow this morning. Issac has been in and out of it all day. He played with a girl from up the street for a while and then he and I tried to have a snowball fight.  I really love the snow and hate that we don't get more. I just think there is nothing more beautiful than looking out the window and seeing that snow come down.

We didn't get as much school done this week with the few activities that we had to do.  We'll just keep on moving forward like we always do. I don't like to get too behind, but I also try not to stress too much either. Stressing doesn't put the children or myself in a good mood.