January 1st Wednesday of the month

Well I wanted to update the last month first but I started and well I just don't have the time or energy for that post but figured I should post what we were up to today.  

Kids slept in but both woke up in great moods.  We had breakfast while we started making our history timeline books.  I bought a book of really big watercolour paper and we cut the paper to size and made some accordion style books to use for our timeline.  Both nathan and Genevieve are quite excited for this and really enjoying it so far, except the gluing, we are gluing multiple sheets together with contact cement, man that stuff is stinky!   At first I got them to do this part but the glue was drying to quick so I glued the books together.  But the used the contact cenent to glue pictures on their timeline.  

We tried out a couple different size books and nathan and Gigi both went for the larger size books.  We will make book ends for these with bookend cardboard and cover them with fabric.  That way you can keep it folded like a book, flip through the pages or unfold to see it all payed out.  We may make a few of these books for different time periods.  

Genevieve was super excited it was watercolour paper, she started right away by painting some important events and decorating her book. 

Nathan working on his, as he was writing a title on his first page I had to bite my tongue as I was going to tell him to take his time and make sure it was neat.  I realized before I said it he really was trying hard and doing his best.  Instead of painting nathan searched the internet for pictures that worked with his timeline.  His first event was the Big Bang, it was funny when he looked it up as he looked up the Big Bang theory images and all he got was the tv show, he said u think there is a tv show called the Big Bang.  We do have timeline pieces from homeschool in the woods that we will use later, but nathan looked at them and was a little confused how both dinosaurs, the earth and people are all 5000 years old.  We had a discussion on what young earth creation is.  

Nathan's work, I wish his poor hands did not hurt and he could get out on this timeline what I know he would like to write about the Big Bang.  Gigi asked what was there before the big bang.  Nathan said well it was probably black as black is the absence of colour, the absence of anything, white is light, and something else, it sounded better when he said it.  

I love the details on Gigi's!  She is really taking to this and writing notes and different events.  You would think she has done a project like this before!   

We worked on these books for about 3 hours, until we had to get ready for hockey.  

Hockey was a great game!

After hockey we went straight to Abbotsford and I dropped nathan and Gigi off at their grandparents, and they took Gigi to cheer.  I picked up two other moms in Abbotsford and we headed to children's hospital for the first ever meeting for connective tissue disorders.  We had a great drive in, I have met the two moms I drove in with before so we had a good time.  The meeting was facilitated by the heart clinic by a nurse that I have met a few times at the heart clinic, she studies connective tissue disorders.  She had given me her business card a long time ago and two years ago when nathan was in emergency because we thought he may be having strokes I called her and told her what was happening.  She came down to the ER, talked to me and the neurologists.  She could not offer any expertise, as she says she learns more from us patients than she can offer, but it was so wonderful to have her there.  She came and visited nathan and I almost everyday and made sure our needs were being met, she was like our advocate.  

We discussed at the meeting the need to get the children together in a meeting like this, we may in future months bring the kids and let them have their own meeting.  Also setting up some fun dates for the kids.  Most of the parents agreed that their children wanted to know and meet others going through the same thing.  

Leslie also told us of a brand new collagen disorder clinic that has just opened in Vancouver.  We will have acess to mental Heath, pain management, cardiology, ophthalmology, orthopedics, genetics, all in one clinic.  I am going to ask my GP for a referal, so I can get another opinion on my hip, and maybe it would be nice to see the cardiologist at the same time, although I really do like my cardiologist.  

Sick little nathan January 27

Well looks like nathan is sick, he has nicely infected tonsils.  I will check them again tomorow and if there is no improvement I will take him to the dr for a check.  

Nathan does not do well when he is sick so ginger lemon and honey tea was made today.  We didn't do any official school work but learning did happen. 

Nathan played with mini weapons of mass destruction.  

With this weapon nathan used it and thought it should be able to go farther.  He took a look at it and he adjusted the front legs on it, so it leaned slightly back. He explained that when he did that the trajectory was higher and it could fling the object higher.  I think it's pretty impressive he was able to look at it and make corrections and understand what he was doing.   He is quite good at understanding physics.  

This ones called a Viking catapult.  

This little weapon was made by some friends and they have it to nathan, because it sucked and did not fire far.  Nathan took a look at it and figured out why it was not firing the eraser far, it was hitting the elastics and slowing down.  He solved this problem by making it smoother by adding scotch tape on top.  

Genevieve played with duct tape today making wallets.  Duct tape is hard to work with but she seemed to be pretty good at it.  She also practiced a lot of tumbling today.  

We also got a surprise flower delivery today.  Jeff ordered flowers for Friday but the came today.   They were beautiful. 

Thursday, finally some schoolwork feb 19

We managed to get some school work accomplished today :).  We read chapter 10&11 in sign of the beaver and answered the questions.  We were going to do some research on beavers but the kids assured me they did that last year, I think they did it while reading the lion witch and the wardrobe.  So I did not make them repeat it although it may have been interesting to see the difference a year has made.  Instead nathan and Genevieve wrote a letter to let everyone know who they deliver papers too that they have taken over the paper route.  I did not help them at all as I wanted it to look like they had written it themselves, it is their job not mine.  I think they did a wonderful job and handed it out today with their papers. 

Next we went to physio.  

Then came home and kids did the paper route, this takes about 1.5 hours.  We finished in time to have a quick bit to eat before heading out to cheer.  

Also during this quick 1/2 hour break I managed to scan drs letters and send them to the nurse reviewing our at home application.  I'm not sure what or how to show them that nathan can use the help.  

I sent in his children's discharge paper

Abnormal EEG

Documented systolic ejection murmur 

Nephrology

Neurology

It's i think an overall thing but really so many things with nathan are we have no clue what is happening :)

Wow

Woke up this morning with nathan complaining he wasn't feeling well.  Nathan played math games on the computer all morning and Genevieve made her treasure chest for her little mermaid prop.  She did it all herself, I will have to help attach the lid.  

We delivered papers, poor nathan struggled as he was unwell.  But we delivered in good time

Next we went to physio and music for Gigi. Genevieve practiced her firework song with Kim, this helped her soooo much yeah!   

After nathan was supposed to have a play date, but he cried that his throat was hurting and he just wanted to go home and rest for a bit.  So we did that.  Nathan was feeling miserable again before cheer so I checked his throat and he has nice swollen pussy tonsils again...  So I called and made a drs appt for tomorrow morning.  Seriously nathan was just feeling do positive about learning and now he is sick!   Will this kid ever catch a break?  

Ginger taking it easy while we were doing schoolwork :)

Nathan trying to scare daddy with a new hairdo!

second term teacher meetings

Today was our teacher meeting with Rachel, Nathans teacher, and yesterday we had Rebecca over, for Genevieve.  How lucky am I to have these wonderful teachers support us!  It has been a little bit of a rough term for us, filled with ups and downs.  Both Rachel and Rebecca, were able to help me see it through their eyes all of the wonderful learning we have accomplished in this term.  I don't feel as organized this term, and I don't really like that, but sometimes you have to just roll with life, and I am trying to do that.

Nathan and I had a wonderful conversation this evening.  I asked him how he liked his chemistry class that he went to on Tuesday.   He said it was soooo awesome, he said it was really good that I talked to the teacher ahead of time and let her know he could not do the writing portion.  When he was worried about going I asked him why, and he told me that that was why he was worried, I told him to tell the teacher himself that he has Ehlers Danlos, and dislocates his fingers, he said but what if she is like some of my other teachers and just doesn't believe me.  So I told the teacher for him.  And then he said and it was so awesome being able to read the directions on my paper.  I knew he had trouble getting sick while reading, but I had no idea what a struggle reading was for him!  I almost started crying when he told me this.  I said oh Nathan school must have been so hard for you when you attended.  He said it was pretty hard, reading made me sick, I could not hear the direction, read the directions, and I could not print well.  I said how did that make you feel.  He said I felt pretty dumb.  I said you know that is not true now right Nathan?  He said yes I know now because I am homeschooling it is so much easier to learn things.  He said, also I know that I know things that most kids my age do not know or understand.  Then I said to him Nathan you know now that you can read books with lots of words on the page, you can read anything you want.  You don't have to rely on me or anyone else to teach you something, if you are interested in something you can just pick up a book.  When I started to talk to him about this, he had started reading steven hawkings book a brief history of time.  He went to bed reading a highschool level chemistry text book, as he wanted me to find him a book that explained atoms to him.  I am unbelievably happy for him, and how much a simple heart medication has done for him.  It has literally changed his entire world, he is a new kid! 

Poor gigi was exhausted today, she has 2 hrs of hockey and then 2 hrs of cheer.  When I picked her up from cheer, I turned on her katy perry song for her to sing and practice.  She said no I don't want to do this, I replied gigi you need to practice.   She said, no mom, I am exhausted, and I am hungry, I don't want to practice, I just want to go home and go to bed.  I put her in the bath when we got home with Epsom salts as the poor girl was crying with muscle cramping.  She forgot to bring her water bottle to hockey and I think she got a little dehydrated.  I had made them their favourite carrot/celery, spinach and fruit smoothy. guess I should have added something salty.  She went to bed happy though after her bath.

another busy, but happy homeschooling day!  I cant wait to see what these two do next :)

Wednesday and pediatrician appointment.

Was anyone expecting any school work to get done today, yeah I had kinda planned it or wished it.   I was unsure how school would get done today.  

I recieved a phone all at 9 am for nathan to be at the pediatric clinic for 11.   Perfect 1 1/2 hrs of school can be accomplished except we agreed to do our friends paper route because they are away.   That takes 1 1/2 hrs.   So we did part of the paper route, my parents came down and my dad took Gigi around to finish her paper route and my mom and I went to Nathan's appointment.  

Nathan's appointment, well good news is that his lump is healing and going away.  Bad news his genius pediatrician is stumped as to a cause, it is very irregular.     Here is what we know: it's vascular, it's sitting in top of the muscle underneath the epidermis, it is not a bruise.   

I asked a few questions.  I asked well if this was a trauma you would see more discoloration because if he was hit a hematoma ( bruise) would occur in the epidermis.  Well the answer to this was probably, but trauma still can't be ruled out.  

I suggested that this could be a ruptured vessel in the facia. My theory is this would cause a hematoma and have no visible discoloration bruising as it is quite deep.  This seemed to be the most plausible explanation but we can not know for sure.  

He said nathan is a medical mystery and said well you should be used to that.   

How does this make me feel?  Relieved that it is going away without needing intervention.  Slightly worried that this was a spontaneous rupture of and artery.   But I want nathan to feel like a normal kid, do all the things other kids do.  Nathan is a cautious guy, I know it would worry him if we did more invasive testing on him to try and solve the case.  I think he needs to know he is a healthy child.  He knows his limitations most of the time.  I don't want him to be afraid of going to the dr, or afraid when something new happens to him, because we all know he is constantly going to have something new happening to him.  So I think for now this is the course we need to take.  If another thing happens like this I think we will get an MRIA done to see a clearer picture.  We talked about getting a MRIA done when nathan was 12 to rule out any vascular events such as dissections or aneurysms, maybe we can ask to have it done when he is 11.  We see his pediatrician in another 2 months for a follow up check.  

After drs visit we went home and I made lunch for everyone while nathan found Gigi and helped her finish the papers.   We then had hockey from 1-3.  Raced home to deliver 8 papers to the housed my dad and Gigi could not find, took in my neighbors garbage can because they left today on vacation ( too bad I forgot to take out mine at 7 am, or too bad I slept right through hearing the truck), and sent nathan in to have a shower and Gigi to change from hockey star to cheerleader.  Gigi almost scored a goal today!   It was pretty awesome.  We managed to get out if the door at 4:01 to head to cheer.  

We had dinner at Wendy's after cheer, I told the kids it was bedtime when we got home even though it was 7:30, although nathan was still awake at 9:30.  He was hot and having a hard time sleeping.  Not sure what is bothering him.  

Tomorrow is another day :) let the week carry on and get easier...

What a week

Jeff was home this week!   We had so many things on our mind this week it was a little terrifying actually.  Jeff had a cancer scare and we had to wait for him to get an ultrasound.  Thankfully that ultrasound happened on Monday, the day before he left and we were able to get in to see our dr for her to say it is not cancer.   So Jeff and I had this heavly on our minds all week.  On Wednesday morning nathan notices a lump on his leg that is a little painful, and of course weird.  Well poor nathan knows a little to much medical things and concluded that this lump was where the femoral artery runs and that he had an aneurysm.  He then thought he was going to die as the femoral artery is the largest artery in the leg if it ruptures I'm dead he says.   Oh boy, it was hard to convince him it was not, I called his pediatrician who was swamped and on call that day.  He said he didn't think it was an annyeurysm, but he would try to call us later to come in.  So I took Gigi to cheer, nathan was still quite frightened at home, tried to convince him if I thought he was near death I would not be leaving.  He said he would not believe until he actually saw his pediatrician.   Jeff had a drs appt with our GP the next day and I thought about waiting to see her.  At 8 o'clock I decided that it was better to go to the ER with him to make him feel better.  Thankfully hardly any wait at the ER.  We saw the dr and she had no clue what it was, but she told nathan she did not believe it was aneurysm   but he needed an ultrasound.  Nathan felt a little better, but apparently did not trust this dr.   Next morning at 7 am I get a phone all asking nathan to come in for an ultra sound right away.  So off Nate and I go.  After the tech was done she said I will go check with the radiologist as he may want to come and look for himself.  Sure enough in comes the radiologist to get a look at it himself.  He is baffled and asking me lots of questions about EDS.  He said that it is not an aneurysm and not a hemotoma, but that it is vascular.  He said he would have to do some research on it and see if he could figure it out. Oh boy, why do we always have to have the weird and the strange things happen to us???   The tech suggested that we head right over to his peds office to see if he could take a look at Nate.  Turns out he was again on call and crazy busy.  Assisting in the delivery if twins etc.  So we then headed over to our GP she took a look and then sent a refferal to the Ped so he could get paid to look at Nathan's leg, cause apparently the ped won't get paid to look at his leg because that was not what his refferal was for.  Oh how I love all the run around.  So we got that done and then we had to wait...   We decided to go to ikea and take the car into Volvo.  Well I get a phone call while at ikea from Volvo saying that some idiot put power steering fluid into our brake fluid. Apparently it eats rubber so it wrecked our breaks!!!   It will either be 1000 to fix( that's just the start).  Or as high as 5000 to fix.  Really!!!   That's what I needed to hear at that moment, I thought it would be simple ha ha.   Poor Jeff had to deal with me in an emotional stupor.  We had to leave ikea without our intended purchase as I could not pick out a chair I wanted for our bedroom.  I can't make decisions when I am stressed.  And I think I was close to my maximum stress potential.  

We then went to the fabric store to pick out sequin fabric for Gigi's dresses for her voice completion.  This was much easier to purchase as I think Gigi is a little designer and picked out everything, she then went and got her brother to ask his opinion.  I love that he was so kind to her and really helped her make her decision.  I think the sales lady either thought I was crazy or Gigi was adorable as I let her pick out all her trims, and the sales lady was helping her make decisions and showing her different things.   How much I love that Gigi knows exactly what she wants, it's a little harder when I have to create what she envisions ;)

Next was back to Volvo where I end up test driving a s60.  Really nice but I don't want to spend 30,000 on a car.  I took my Volvo home without fixing it to determine what to do with it when I am not so stressed.

Next up was the Harlem globetrotters.  The kids liked it, Jeff and I thought if was terrible, yes maybe out moods affected our enjoyment but it sucked.  It seemed they could only be funny if they pretended to be strippers, gay, or if they made farting noises.  Oh and give presents to woman and say since I have you something, you have to give me something in return!  Then demand a kids, at first on the cheek then the other cheek then asking for a kids on the lips!!! Seriously what is that teaching.   Then bringing up another mom and twerking.  1/2 time show was a local dance company with 6 year olds wearing lingerie, bustiers and hot pink bras.  A few on the older girls were bursting our of their bras it was terrible.  

Next day we get a phone call from ped, saying he's reviewed the ultrasound and has no clue, but it is a good sign that it is painful.  He thought the best thing to do was wait until Wednesday to see him as since he had no clue and if he saw us that day, he would just want to monitor it anyway.  So in we go tomorrow for another appt.  his leg lump is getting smaller so I'm sure it will just go away on its own.  But why he is getting a leaky vessel I don't know.  

Monday comes along Jeff gets his ultrasound.   Nathan gets what I thought was a migraine at the drs office, he lays in the waiting room floor, because he feels queezy and his head hurts.  Normally with severe migraines it feels better when he lays flat so that's what I thought was happening.  Jeff and I go into see the dr alone and leave Gigi to watch Nate.  We get the good news and come out and nathan is passed out sleeping on the floor.  Still at this point thinking migraine as you get very tired after one, but never has nathan fallen asleep.  We get him home and find out he has a 104 fever.  He sleeps most of the day, but wakes up today feeling better.   

Today was definitely a better day, I did the taxes last night, that was good to get done and figure out, we are able to buy the extra RRSPs we need before deadline.  Bye bye new car but good for savings in the long term.  We had to say goodbye to Jeff this morning, but I was just so happy he was leaving and we had already found out it wasn't cancer and we did not have to wait 2 more weeks!   It also felt great that Jeff and I just made it through one of the most emotionally draining weeks we have ever had and still intact and we managed to work it all out together.  I guess trials can make you feel stronger, but I am done for a while can I just breeze through life.  

So what did we accomplish this week in learning, I have no idea lol.  Nathan and I worked on multiplication tables he realized he knows the 0,1,2,3,4,5,6,10 times tables already.  I think that made him feel pretty good.  He studied his anatomy posters, to confirm what he thought was going on with his leg.  

Genevieve and I worked on dress design, did some tumbling.  She did lots of art and made Jeff and I cards and notes, I should take pictures of these.  She watched full house, is that considered history?   

Here's to the next two weeks being uneventful 

family day monday, time to catch up a little

Wow, I was surprised again this year, when I got the email, from both teachers that it was time for our semester meeting.  This semester always gets me, I mean who doesn't take 6 weeks off at Christmas time to recuperate?  Okay we did not take a full six weeks off, but we did a lot of outside the box work.  I talked to Nathan and Genevieve that we really need to show our teachers some work that we have done since our last meeting.  I said we don't have a paper trail of what we have done, we don't have any worksheets or anything  to show.  Nathan said wow your right, but we have been busy doing lots of other things.  He said he has been doing a lot of reading.  Which he has, he has read all of the max axioms that were purchased for him from the school.  He started reading the cartoon history of the world.   http://www.amazon.com/Cartoon-History-Universe-Volumes-1-7/dp/0385265204/ref=pd_sim_b_4?ie=UTF8&refRID=1CPCYETHQ7BYT2QV1AW1

Today we started off with some latin, we have taken a little break, but Nathan and Genevieve had fun getting back into it.  They enjoy having their secret language.  They enjoy song school latin even though it is a little too young for them, I think they like the goofyness of the cartoon, and it is only about 10 minutes per lesson on the DVD so it does not get too annoying for them, that they seem to talk down to you.

We then did some latin worksheets, and some moving beyond the page worksheets.  They had to develop a lesson plan on teaching the letters of the alphabet.  They also had a sheet on relationships, they had to discuss how they would give something to one of their friend.  Nathan quickly did these worksheets, but he did not do the teaching one well, he only wrote 1 work per letter.  Poor Nathan does not do well with worksheets, he explained to me how he would do it but could not write it down, poor guy.  I came up with a different way for him.  I told him he could video tape himself teaching.  This turned into gigi and Nathan working together.  I think Genevieve really enjoyed this.  Nathan liked it better than writing but was definitely not as into it as Gigi.  Nathan was feeling pretty tired, and looks pasty white today, he did have a headache yesterday, so not sure if it is leftover headache stuff or perhaps he will feel unwell tomorrow.  He had trouble sitting and even standing long enough to tape their performance.


Here is their performance part 1 and part 2

Update - I knew Nathan was not looking so good.  He developed a headache this afternoon, a mid level headache.  So after video taping this last episode, he went outside and played hockey.  He then came in and was really grumpy, he finally told me he had a headache and asked for pain meds.

Well Genevieve was pretty inspired after doing the two episodes with Nathan, so she wrote and completed letter B by herself.  We taped 2 out of 3 parts of the letter B today.  She was pretty happy with what she accomplished she wanted to do more, my battery was dead and it was almost dinner and I was tired, so she made a banana cream pie instead.  She used a bought pie crust, and she used a cooked pudding recipe.  She made it by herself on the stove.  She chopped up banana and fruit to place on top, yummy, I guess I should have taken a picture of her finished pie, but we already ate half of it.

Here is "Fun Facts with Genevieve"  She had to come up with a name. :)

Part 2

Saturday febuary 7 Cheerfest

Genevieve has been working like crazy, trying to get her tumbling skills up.  She has been working really hard since being put on the youth team.  I think the challenge has pushed her a little.  Although I do think that she is maybe doing a little too much and feeling a little too tired.  She does seem to burn herself doing so many things and trying so hard at everything she does.  She wants to stay up reading at night, and then wakes up in the morning full of energy and ready to conquer the world.  She seems to go nonstop all day, the only downtime she takes, is playing minecraft occasionally and watching Netflix episodes. 

Here are her two performances


The first one is her youth team, this is the first competition, where she had a tumbling pass in the routine.  She just got her front walkover perfected literally on Monday, and here she is Saturday performing it.  She stumbled on her front walkover but carried on into her roundoff and finishing with a backwalkover.  Love how she was determined and just carried on.

Here is her mini team.  A bunch of older girls on the valley stars were sitting by me cheering the mini team on, and they said, this team has to be the cutest team ever.  Ha ha I have to agree they are so cute.  Next year she will no longer be on a mini team as she will have aged out, so last year of the adorable cuteness of the mini and tiny levels!  Each year just gets more exciting seeing her progress though.