Wordless Wednesday - Johns Hopkins

I have to brag.  Warrior has been invited to tour Johns Hopkins and Notre Dame. 

He's torn between both of them.  For pre med/med school and lacrosse.

Varsity Lacrosse

Warrior tried out and made the varsity lacrosse team.  Not only did he make the team but he was the starting goalie.

The coaches were amazed with his talent and told me, many times, how thankful they were we decided to move here.

Before the season officially started they had 3 scrimmages.  They won all 3, by more than 6 goals each game.  Warrior couldn't wait for the official season to start.


On February 23rd, his junior year of playing lacrosse came to an abrupt halt.

I picked him up from practice and he had his left hand bandaged up along with a note from the trainer suggesting I get his hand xrayed because the knuckle on his little finger wasn't where it was supposed to be.

Warrior was pretty sure his pinky finger was broken.

It wasn't.  He broke off his knuckle.

At the ER they were talking about possibly having to do surgery, but they talked to an ortho doctor and he explained how to splint it until we could get in to see a dr the next day.

Let me tell you, in Redneckville there aren't many ortho doctors close.  Not to mention this was also during the week that it snowed and the entire state freaked out and closed down.

Thankfully the doctor was able to get us in.

He was concerned about the possibility of surgery, but decided to try and numb the hand and then push the bone back into place.  Then splint it, while pinching the fiberglass around the broken piece. 

Then xrays in a week.  Then more xrays 2 weeks later.  They decided then that he didn't need surgery, but he was going to stay in the splint instead of getting a cast.  The splint they were able to pinch the fiberglass to hold the bone in place and that wasn't going to work with a cast.

6 weeks.  Then 2 weeks of physical therapy to get motion back in his wrist and the 2 fingers.

This took us to a week after the season was over and into playoffs.  Since he didn't get to play during the normal season, he wasn't able to play in the playoffs.

This bummed him out, but he was thrilled that his team made it to the 2nd round of playoffs.

His team was also chosen for the South Carolina Chapter of US Lacrosse Ret Thomas Sportsmanship Award.  This is awarded to 2 teams in the state.  One boy's team and one girl's team.  The refs and officials choose who they think had the best sportsmanship throughout the entire season.

So proud of these boys!

May Already?!

I can't believe its already May!

We have been in South Carolina for 9 months now.  And have been super busy from the moment our feet hit the southern ground.

Its amazing to me the difference in how people interact here.  In California, most people don't talk to you unless they absolutely have to.  Here they stopped us in the stores to find out where we moved from because they hadn't seen us around before.

Also paying almost a 3rd of what I paid for rent in California has made life much more pleasant.  I'm not nearly as stressed as I was there. 

Plus the move has proven that it was the best decision.  Even the kids have thanked me for moving out here even though they fought me at the time.

Warrior is a junior this year and has been busy with studying for SATs, lacrosse, and a club at school that raises money all year for St Jude's.  Then the weekend before spring break the teacher rides from here to Memphis on a moped to take a check to the hospital.  The students are allowed to ride in a van following him.  So much fun and such a great cause.

He's also driving.  Let me tell you the thought of him driving isn't nearly as terrifying as actually being in the car with him behind the wheel.  Don't get me wrong, he's a great driver, but its all these redneck drivers that scare me.  No one around here believes in turn signals.

Sugar Pea is in 7th grade this year and has blossomed into an amazing girl.  We haven't had a bully problem since we left California.  No worries about someone commenting about her not having a dad.  No worries about them throwing things in her hair.  She's focused on her friends and school.  She's also in the middle school club for raising money to St Jude.  She was in the archery club at school, and active in the grief club at school.  Her counselor told me she's amazing helping other kids know that what they are feeling is normal and that they aren't alone.  She's the only one in the club that has lost a parent, but she realizes that no matter who you've lost, grief can be hard to deal with.  I'm so proud of my girl.

I had her IEP meeting 2 weeks ago and can't believe how much progress she has made.  She is officially done with speech therapy!  This is a huge step.  And her teacher says that not having people constantly making fun of her has brought out her confidence, so she isn't afraid to speak up.  TO think, had the school dealt with the bully issue several years ago, she could have been done with speech long before now.

She's also made huge progress with her processing disorders.  She still gets a little extra time, especially on tests, but we feel she doesn't need the resource time she had before.  This means next year she'll be able to take more electives! 

She's also decided that she wants to be a nurse when she grows up.  Not just any nurse, but a nurse in a cardiologist office.  And a nurse that designs cool looking scrubs as a hobby.  She's done 2 days of job shadowing nurses.  One in a peds office and one in a cardiologist office.  Warrior job shadowed the cardiologist too.


Its hard to believe they only have a month left of school.  I'm looking forward to it, but it also makes me sad because then I will have a senior and an 8th grader.  I'm not ready for that.

Driver's Permit and IEPs

Warrior started driver's ed at school this week.  Yesterday we spent the morning at DMV so he could get his learner's permit.

Let me tell you, this mom isn't sure she's ready for this.  My wallet on the other hand is loving that I don't have to pay for driver's ed. 

Yesterday afternoon I had Sugar Pea's IEP meeting.  Usually we have them at the end of the year to decide which way to go for the following year.  But since she's new to this school/district/state we had one now and then will have another in May.

Every other year I have hated walking into the school for this.  I knew I was going to be bombarded with a lot of bad news.  So of course, I had the same feelings this time too.

Only I was met with great news!!!!!!!!

Sugar Pea has had an IEP in place for speech, math, writing, and allowing her extra time on assignments, tests, and quizzes.  The resource teacher and the speech teacher can't figure out why she has IEP for speech (which is huge), math, or writing.  That she does great in both of those classes.

They also don't feel she really needs the resource help but do agree that she still needs the extra time.

We left everything in place for now, but will definitely be redoing everything at the end of the year.

I am so proud of her.  At the end of 4th grade I was told that she was working at barely the middle of a 1st grade level, and now in 7th grade she's right where she needs to be.  She's come a long way in such a short period of time!!!!!!

Well Hello There

Well Hello There!  Its been a little while.  I started school a couple weeks ago and have been trying to get used to a new routine, not to mention homework.  All the homework.

Add to that the kids' activities and when I'm not in school, I'm in my car driving from one activity to another. 

If you haven't heard yet, California is in a horrible drought.  Like "seriously run out of water in the next 2 months" horrible.  Not all of California is about to run out of water, but 17 communities, including the area I live, are.  We've gotten a little rain the last few days but nothing like what we need.  We need lots and lots of rain. 

Ewok wasn't sure what to think about the rain.  Unfortunately he liked it and I had to chase him in it to get him back in the house.

I had a conference with Sugar Pea's teacher last week.  You have no idea how happy of a mom I am.  In math she is above grade level. In reading and science she is at grade level.  THIS is huge!  Since she wasn't diagnosed with the Visual Processing Disorder until the end of 4th grade, and at that point was about 3 years behind, having caught up in less than 2 years is amazing.  We still need to concentrate on writing, but he said even that has shown a huge improvement.  So proud of her!

Warrior has had an ingrown toenail for about a year.  The old doctor didn't want to remove it.  She did the antibiotics, epsom's salt, and hoping it would grow out.  Insurance issues forced me to find a new doctor for the kids.  This doctor took one look at it and said the nail had to come off.  That was 3 weeks ago and other than not having a nail, his toe looks normal, and is back to normal size.

soaking his foot and texting, of course.

 He took a break to watch her numb his toe.  I love the look on his face.

 back to texting while we wait to make sure its fully numb.

 off the phone to watch her remove his nail.  He looks a little to excited to be having this done.

He claims he needed a haircut because of lacrosse season, but I'm thinking the new girlfriend had a little play in it too.

Christmas Tree and Ms Vice President

Last Christmas we weren't in the mood to do anything.  We were counting down the days until it was over and all the Christmas decorations went away.  This year we still aren't 100% into Christmas, but its slowly coming back. 

The kids decided they wanted to get a tree to take out to Tin Man's grave.  We were going to wait until we got down there to get one, since I am severely allergic to pine, and really don't want a tree in my car for 7 hours.  But the Christmas tree farm that friend of ours run means a lot to us because the last Christmas we had with Tin Man we spent a lot of time up there (and tons of money on allergy meds). 

So I gave in and decided the kids were right and this was the best place to get a tree.  Its small, and fits in the trunk, but is going to be tied to the top of the car.  Its the only way I will be able to survive the drive.

Sugar Pea's school started a student council last year.  This year she decided she wanted to run for Vice President.  I was very impressed and so proud that she got up in front of the entire school and gave her candidate speech. 

Considering this is the child that wouldn't speak in class not that long ago, her getting up to give a speech in front of the school is amazing.  Once we finally got a diagnosis (auditory processing disorder, visual processing disorder, and short term memory loss) and finally knew how to help her, she's made amazing progress!

Yesterday was the election and Sugar Pea is the new Vice President!  I'm such a proud mom.

Interview - Proud Mommy Moment

Warrior has an interview today.  If he's accepted he will spend 3 days 2 nights in Sacramento at a youth leadership conference. 

Pretty proud mom here!

Preparing For SATs Already?

Last Wednesday Warrior took his PSATs.

Now we are looking toward next years SATs.


Where did the time go?  It doesn't seem like he should be 14, almost 15, a sophomore in high school, and preparing for college already.

It saddens me.  A LOT.


This weekend was also a huge reminder that even small things, weird things, make them realize just how much they miss their dad.

Warrior had a small meltdown because his dad wasn't there to cheer him on.  Its not something he even thought of before, but after the test it really hit him hard.

Its the little things that bring all the emotions back to the surface.


Today I ordered Warrior several books and flashcards to help him study for the SATs.  He wants to get into Stanford, so he's gotta get a jump on it.

I'm not to worried about him, but I figure he can use a little bit of a head start.

During my research I found one book written by a perfect score student.  (SAT 2400 in Just 7 Steps: Perfect-Score Student Reveals How to Ace the Test)  He supposedly bombed the first time he took them, so he decided to learn all he could and ended up acing it the second time around.  I'm hoping this will give him some useful hints and study tools.

I remember from my SATs all the vocabulary.  When I came across 500 Key Words for the SAT I knew I had to get it for him.  It uses pictures and stories to help memorize the meanings. 

He may not be so excited when they get here, but one day he will thank me.  When he's  a big world famous heart surgeon he can thank me in the way of a nice car, maybe a house.

I can't believe my little boy is already so grown up and working his way towards the SATs next year. 

Wordless Wednesday - Donate Life Walk

This past Saturday was the Donate Life walk.  We walked in honor of Tin Man and his donor.

It was great seeing all our friends, and meeting new ones.  Tin Man was definitely missed.

It was amazing to see the people chase the kids down so they could meet them.  It definitely made me a proud mom!

With their poster.  We had so many people stop and comment about it.

 They wanted a picture with Snoopy holding the sign too.

 Then after the walk we got to spend the day at Great America.  Well supposed to.  2 hours in it started pouring and we were soaked, cold and miserable so we headed home to warm showers and dry clothes.

 Warrior is in the last car and Sugar Pea is in the 2nd to last with her uncle, Tin Man's brother.

Summer Coming To An End

I can't believe how fast this summer went by.  I know part of it is because we have been gone this last month.  2 weeks in Southern California and 2 weeks in Oregon.

We are still have days that being in the house is hard, so getting away helps.  A lot.

We spent the time in Oregon with my sister and her family.  Plus my mom.  Then my mom came home with us to help me out after my surgery. 

On Monday Warrior starts school.  Sophomore year.  

I know I am biased, but I am so proud of his schedule for this year.


On top of these classes he's also joining student goverment, playing lacrosse again this year, and helping organize the blood drive.  So so proud of him.

Sugar Pea doesn't start school until the 26th.  She will be in middle school this year.  She's still in the same school, but 6th, 7th, and 8th are separated from the rest of the school for most things so they have the feeling of being in middle school and not part of elementary school.

She's excited for school to start.  She misses a lot of her friends, and she's getting bored.  Plus school starting means she's that much closer to science camp at Yosemite this year.

I can't believe how fast my babies are growing up!

My Kids Are Amazing!

This last year has been a living nightmare.  What went from being an amazing thing and the start of a new, better, live, turning into a nightmare in an instant.

Its been 11 months since Tin Man's transplant.  And its been almost 10 months since he's been gone.  I look back at everything and can't believe its already been 10 months.  But at the same time if feels like, its only been 10 months?  I feel 10 years older, at least.

My kids have been what's kept me going.  I honestly don't know where I would be without them.

Watching them go through the ups and downs during all of this has shown me just how amazing they really are.  I have always thought they were awesome kids, I mean, I am their mom.  But their strength through all of this has left me speechless many times. 

As most of you know, they started a Facebook campaign wanting to get 1 million likes for awareness for organ donation and congenital heart defects.

They reached over 1 million likes in just a week.  During all of this they decided they wanted to do more and 2 Kids For Organ Donation was created. 

They have been invited to come speak at the local high schools, but also at a few high schools in LA/Long Beach area too.

Last night they amazed me even more.  We were all laying on my bed watching a movie and Warrior asked if he could run a couple of ideas by me.  One of the things he asked is how they could make 2KFOD into a non profit.  Then he asked how they could raise money and start a college scholarship for kids who lost a parent either waiting for a transplant or after transplant.

I sat there looking at him and cried.  I can't believe how amazing and mature my kids have been through all of this.  They have every right to scream and cry and be angry about all of this, but instead they are using everything they have been through to find ways to help others.

I have the most amazing kids!

Wordless Wednesday - Sign Up To Be A Donor

My Wordless Wednesday is a little different this week.

Warrior has wanted to make a video about his dad for several months now, but he's never had the courage.  Until now.

He tried making this as a video but broke down half way through it, so he decided to do it as a series of pictures instead.

There's no sound.  No music.  Just his message.

I'm so proud of him!

Speech, IEP, and Fighting

Last week I talked with Sugar Pea's principal a little about trying to get Sugar Pea's speech class changed from 1 day a week to 3 days.   She's made huge progress in the last 4 years, but she still has a long way to go. 

Today I had a conference with her teacher.  She was telling me that Sugar Pea will be one of the first ones to raise her hand to answer a question, will raise her hand to participate in a class discussion.  This is great to hear because last year she barely spoke in class.  3rd grade she was a little more open, but last year she wouldn't talk unless she was forced to.

I also filled out the paperwork to request her IEP be moved from March to as soon as possible.

I want to add to it.  There is a new program at the school for ESL (English as a Second Language) kids that the school.  I'd like to get Sugar Pea into it.  Because of the hearing issues when she was a baby and toddler, the speech delay, and the Auditory Processing Disorder, I think this would be great for her.   I've done some research on it and talked to her teacher and a friend of mine about it (she's ESL teacher) and we all agree that this may with her delays in language concepts area.  Especially getting her thoughts down on paper.

That's the only concern the teacher has.  She's doing awesome with her reading assessments.  This latest one that was done last week she scored a 92% on the 5th grade level assessment.  95% is proficient.  So being 3% away from that is awesome compared to where she was this time last year.  I'm so proud of her!!!

Her latest math assessment she scored a 89%.  It covers everything they've learned so far this year.  


I can remember when I was young and hated parent/teacher conferences because I was always afraid to find out what the teacher was going to tell my mom.

Up until this year I've been afraid of the conferences about Sugar Pea because they always focus on the delays and the problems and never really talk about the good part.  Her teacher last year, made her out to be this horrible student, didn't know anything, couldn't read, and pretty much a lost cause.

So to finally have a great conference, one that made me come out with a smile on my face was great.  Especially with everything that's been going on in our lives this year.  To know that even with all that and the roller coaster of emotions we've been on, that Sugar Pea is still giving it her all, and now that we know how to really help her its starting to all pay off.

Insanely Proud Mama!

When Sugar Pea was in 1st grade she was diagnosed with an Auditory Processing Disorder.  Imagine Dyslexia for the ears.  She had a hard time with verbal directions, and needed to see examples of things she was supposed to do. 

After she was diagnosed and we focused her IEP on this and her speech delay, things should have gotten better for her.

They didn't. 

2nd grade wasn't bad, but the teacher did a lot of the assessments orally, so she did really good.

Then 3rd grade came around and things started to get harder and she started struggling again.

By the end of 3rd grade she was behind, but not enough to qualify for extra resources through the district.  Because, you know, they wait until they are so far behind there's no hope in catching up.

4th grade comes around and things totally change.  The class had 2 teachers last year.  Monday and Wednesday was English and Social studies with one teacher and Tuesday and Thursday were Math and Science with another teacher.  So the class as a whole fell behind.  Sugar Pea even farther behind.  This was both good and bad.  Bad because she was so far behind the rest of the class, but good because she finally qualified for extra testing and resources through the district.

Down side to all this is the district took their sweet time testing her, and while I demanded it almost daily, that got pushed aside when Tin Man got his new heart.

It wasn't until the last week in May, the week before school was out, that we sat down and had the "official" meeting.  All the tests showed that not only does she have the APD, but she also has a Visual Processing Disorder.  Meaning to much information on a page gets jumbled up in her brain and she has a hard time deciphering what's supposed to go with what.  She also has problems with short term memory.  Her long term memory is great, but she has a problem retaining things that she reads, or memorizing things, like math facts or spelling words.

This makes reading extremely hard.  Not to mention math almost impossible.  Imagine trying to do a page of math when you're not sure what numbers go with what.

One of the things that was given to me during the meeting was a packet of information on VPD.  I read that thing front to back about 5 times.  One of the main things that it says, is kids with VPD need larger print.  Larger print and less information on a page.  Bring in the Kindle.  We were able to increase the size of the print and almost instantly I could see a difference in her reading. 

Math has been a little trickier.  I've had to get creative on how to make it easier for her.  In stead of focusing on 10 math facts at a time we have to focus on 2 a day.  Once she has those down pack, then we move on to the next 2.  This takes so much longer, but she's not nearly as frustrated as she was.

Also 1 problem per page and she does great.  But put in 30 problems on a page and everything starts to swim together.  I ended up stapling several index cards together with a square cut out of one of them.  She puts this square over the problem she's doing and it covers up the rest of the page.  She was embarrassed to use it at first, but once she realized that it made everything much easier, she decided not to fight me on it.

At the beginning of the year I sat down with the teacher, resource teacher, speech teacher, and the principal and we went over everything I had found over the summer and what did and didn't work for Sugar Pea.  We then came up with a more detailed IEP that included giving her more time, and a quiet space to work if she needs it.  Also adding the use of a Kindle to the IEP so there would be no room for complaining by others about her using it. I also brought her index card thing and explained the difference in her ability to do a page of math using it and without using it.  We decided that the teacher would do her initial assessment without it and then redo it a few days later with it and compare the differences. 

Yesterday when I picked her up her teacher asked if I had a minute to talk.  Instantly I had this moment of dread that I was going to be given the lecture that Sugar Pea is "this" far behind and the teacher doesn't want to deal with it.  I got this a lot last year. 

So needless to say I was in total shock when she told me that she did a reading and math assessment on her yesterday and she's testing at middle of 4th grade reading level. (end of 4th grade she tested at beginning/middle of 1st grade level) and she's right on track with math!!

You have no idea how thrilled I was to hear this!  We spent a lot of time this summer working on trying to get her as close as possible to grade level.  I knew I wouldn't be able to get her to grade level, and I knew she was doing really well but I had no idea that the little things we changed had worked so well for her.

We have another IEP meeting next month to go over how she's doing since the beginning of the school year.  The teacher will give her a more in depth assessment on reading and math and then we'll go from there.

I couldn't wait to tell Sugar Pea the great news.  I decided this called for a special trip to Yogurtland (I'm like a kid when it comes to Yorgurtland) to give her the good news and a special treat.

I'm so proud of her and all the hard work she's put in the last few months.

Warrior's Graduation

Thursday Warrior graduated from 8th grade.  It was a very hard day for all of us.

The day did not start out good.  The social worker from Stanford called wanting to know if I was able to go up that morning to sit down with the surgeon to get the autopsy results.  I told her Robbie was graduating that afternoon and I refused to ruin  the day.  So I have to wait until Monday to find out when everyone is available to sit down and talk.

Then Warrior's plans for after school were changed, which he made sure everyone knew he was not happy about it.  Thankfully after he found out what the surprise was, he was calm and enjoyed himself.  Some parents in the class got a limo for all the boys.  They rode around town in it, and had a pre graduation party in it.  Thankfully that was what Warrior needed to calm down and relax and enjoy the rest of the night.

Graduation was great.  I cried throughout it because Tin Man wasn't there with us and we had an empty seat in our row which was a huge reminder.  There was a memorial tribute to the 3 parents that have died over the last 6 years from that class.  Which was very sweet, but hard to see Tin Man on it.

Overall graduation was really nice.  The teachers talked to each of the kids (only 28 of them) and what they enjoyed the most about each of them.  Then the kids got up and thanked the parents for supporting them through their school years.

Warrior's speech was something like "I want to thank my mom and everyone else for buying me things, being there for me, but especially all the support they've given me in the last few months.  I love you guys!"  He said he felt bad that he didn't mention his dad, but he knew he wouldn't be able to do it without crying.  I told him it was ok, and that dad was there with us and he was so very proud of him.

The thought of summer vacation scares me.  I'm not emotionally or mentally ready for this.

Happy Mother's Day

Happy Mother's Day to all the moms out there.

My mom has been with me for the last month.  She lives in South Carolina, and its been 4 years since I saw her last.  Having her here with me has helped so much this past month.  She's one of the few people in my family, even in my support system that understands what I'm going through and how much I really hate the world right now.  My dad passed away 18 years ago this month from lung cancer.  My step dad passed away 4 years ago waiting for a kidney transplant. 

She's been such a huge help not just with me, but with the kids too.  I'm so thankful to have her right now!


Its been a rough day.  Mother's Day is my day, but Tin Man played a huge roll in it.  He took the kids shopping, helped them make breakfast, and made sure the house was straightened up before they woke me up.

I never really realized just how much I looked forward to that every year.  Not having that this year just isn't fair.

The kids still did their best to make it a great day.

Warrior picked out the flowers for me and Sugar Pea picked out my gift.  They both made me breakfast in bed, and then worked on getting their chores done first thing.  Then we decided to do some work around the yard.

 

We had planned on going to the beach with some friends of ours, but its so cold, that we decided to wait until a nicer day.

I'm dreading Father's Day.  I'm trying to come up with some ideas to make the day easier on the kids.  Anyone have suggestions?

Kids Came Up With a Fundraiser

When all of this first started Warrior really wanted to pretend it wasn't happening.  When Tin Man was in the hospital Warrior just pretended he was back in Southern California visiting his family.  He refused to talk about it.  I finally gave him a journal to write his feelings about anything.  I told him that he could keep the journal private, share it, or burn it in the fireplace.  He chose to burn it because he didn't want to take the chance of anyone reading it. 

In Nov 2010 when the first newspaper article came out he was mortified because people, mainly his friends, wanted to ask him questions about it.  That was until his class decided they wanted to do something to help us.  They designed a quilt.  Each student, the teacher, Sugar Pea, and I got to design a square and then the teacher and her friend quilted it all together.  The kids then raffled it off.  They raised $1500 and were beyond proud of themselves.

All of his friends coming together like that, Warrior started to open up more about what's going on.  Once he started asking us questions, he became more and more interested in knowing what's going on and what to expect.

Now a year later he's doing his graduation project on transplants.  The history of them, the process to being put on the list, and even the wait to get one.  We are waiting on a call back from the transplant coordinator on setting up a meeting with her and with one of the surgeons so Warrior can sit down and interview them.

He's come a long way in just a year and I'm so proud of him.

A couple of weeks ago while we were on our way home from somewhere the kids came up with an idea for a fundraiser.  A kids only art show/sale. 

I thought it was a great idea and immediately starting trying to get more info on it.


Last night Warrior asked me if he could be in charge of it and me just help him when he really needs it. 


I'm so proud of him.  My little man is growing up and into a great person.

Look for more information on the fundraiser.