Thursday, December 31, 2009

Popcicles for breakfast.

Yes, you guessed it. The kids are sick little sickies. They have both had popsicles, ginger ale and chicken noodle soup for breakfast for the past few meals.  It's the only way to ensure the kids are getting enough fluid. I really have to keep a close eye on Kaiya as she is the type to refuse all food and drink when sick. Brian never seems to lose his appetite. :)

Brian has a right ear infection, minor wheezing and some congestion but is older and able to get much of it out and maintain a normal day. Hot, hot showers have become his new thing. Between an antibiotic and regular nebs he should bounce back rather quickly. Kaiya on the other hand was walloped, and how. She has two pretty severe ear infections, start of bronchitis and has been put on antibiotics and some prednisone for the congestion. Poor little thing was/is miserable. If you asked her at anytime how she was, she would respond with "not well". Of course it was an adorable stuffy nose kind of way with a British ”Lola" ( from Disney's Charlie and Lola) like accent which of course made you feel even worse for her. She never complained of pain though. She has been taking her "puke bucket" everywhere she goes in the house. She makes sure to set up her princess towel underneath.

When Pollyanna was here the other night, Kaiya used a saucepan to cough into. It was pretty comical and very dramatic. Sick or not both my kids are still cute and funny as hell; I guess that's why I haven't thrown them to the wolves yet!

I'm extremely happy that this all has happened while Brian is still on break.  It's been nice to try to stay a little longer in bed in the am tending to my own illness.  Both kids' sleep has suffered due to the incessant coughing and they've been trying to sleep in.  I now realize why my dad  insisted I learn self relaxation techniques when I had my coughing fits as a child. You feel bad for them and you want to just tell them to "STOP coughing".    I think how much easier my children & I have it then they did when I was a kid.  We have nebulizers now.   I didn't have one growing up.  I had vicks vapor rub slathered on my back and chest and a makeshift tent over my bed with a humidifier or big steaming pots of boiling water so I could breath in the steam.  I remember my mother hitting my back in a rhythm trying to break up all my congestion or I would sit at the table with my face over a steamy pot with a towel over my head.  My kids can't tolerate either. I also have come to realize why they threatened me with a kid like me.  Guess I was pretty bad.  The powers that be decided I needed to get smacked twice. So folks, this is for you:

It's only taken me 30 +  years to receive my comeuppance.  I anticipate a lot more in the coming years.

We have been rearranging the rooms again to get the best fit especially in Brian's with his wheelchair.  Sick or not, we have to switch some pieces of furniture between the kids rooms. The gold piece my folks made/repurposed/refinished/ for me is coming out into craft/dining area.   I work and play better with organization. I wish I could afford a professional organizer to come in and  take over my space and magically make it fit our lifestyle while I sit , smile and look pretty sipping tea.  ah....

I have lost my new found creative zest due to  widespread germs.  I decided to pour through some  of my craft books for inspiration and try and get it back.  I found Quilting with Strips and Strings by Helen Whitson Rose and have been following Anita's  progress with her scrap quilts and think I may just follow suit.  I have so many lovely scraps from so many different people in my past, that I think I need to reflect, remember and enjoy them as I sew them together into a quilt for myself.   I think I will add some of the 30's reproduction fabrics into it as well. They just make me smile.  I  have a quilt top circa 1950 with 30's fabrics that my mother sent that was hand pieced by the woman who previously owned their house, that needs some attention.  I have a couple birthday gifts and babyshower gift to make too, so I'm just going to take it easy a bit and find my groove again.

 Goodbye 2009.  Hello New possibilities.

Take care,

Thursday, December 24, 2009

It is what it is.

 I have been sewing like a mad woman finishing up gifts for "holiday packages", I swear.   After Brian's Perthes diagnosis, we all just kind of shut down and just laid around together watching movies and reading books trying to keep it as normal as possible at home ; all crafts just stopped. We had to go through a mourning process of sorts. Neither Brody nor I had a desire to look towards Christmas . We were anything but "giving or joyful", when this terrible life altering  and painful thing was happening to our child. Our poor sweet boy. Instead I would go off and cry feeling mother's guilt and  bad for him and our family and what all of this would mean for the next 2-3 years and Brody would just get angry. We really were starting to get twinges of bitterness.  Okay, alot of bitterness.

Our bitterness has melted away and an overwhelming feeling of gratitiude has taken it's place.  We are privilidged to live in the community that we do and have the friends that we do.  We are thankful  for the kindness that has been shown to us & to Brian during all of this.  We are not accustomed to asking people for help, so when people just started doing nice things and volunteering their time to us, we were blown away.  Thank you so much to all of you for your kind words and gestures it really has meant the world to us and to remind us that we are not alone. We are loved. Our families have been a great support.  Old ties have been rekindled . We will get through this, because it is what it is and that's what you do.  Things are good.

Okay on to the crafty part of this blog. I was reading through some of my favorite blogs, trying to find some pretty last minute gifts to make .  I came across  Wendy at Dozi Design  and this tutorial screamed  "MAKE THESE RIGHT NOW!!!!" She had made hers out of a heavy weight paper. 

I decided I was going to use suede from an old skirt that I picked up at a yard sale, as it would require little to no sewing. As I started to make these, I got the idea to soak some very thin felt in Linit Starch and iron them to a crisp finish.  I then followed the tutorial cutting out my spirals and started rolling them as it instructed.  I added some green felt leaves, onto which I will hand sew some little details and add a pin backing that my folks had sent.   This will defiantely be a project for many future events.  Thanks you so much Wendy.

I wish you all warm hearts, full bellies and feelings of love and kindness during this holiday season and in to the new year

Take Care.

Friday, December 18, 2009

Surfing Quilted throw.

This is Brody's throw.  It  measures 46 "x 56 ".  I made it with  any and all surfing shirts the boys have had.  There are two t-shirt panels in it as well that were Brian's . He he wore them  a lot.   There are also panels of linen and corduroy .  i finished off the binding with navy blue cord.   I still have more scraps and
plan on making a few more of these after the holidays pass.

 ( blast from the past.  2006)

It was fun to make and I finally feel like I'm accomplishing the "I'll do this someday" pile.  That pile has gotten huge.  I have collected and collected saying "someday" the whole way through.   Someday is now.  :)

Take Care.

Wednesday, December 16, 2009

Big Bad Wolf.

I swear he has a come a calling.   It feels like we are living in a straw house and one really powerful breath blown in our direction will send us reeling.  
Pen & ink drawing

Take Care.

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Wednesday, December 9, 2009

It's exhausting.

Take care.

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The building is not on fire.

This is the analogy Dr Standard used in a recent online chat session with The Perthes Group. It seems Brian’s pain has been due to increased fragmentation on his right side and micro fractures in the core bone of the ball and hip joint. There is no cure or any way to stop the deterioration. The disease must run its course. While it does, these micro fractions lead to increased inflammation and pain in his hip joint. So as dire as it immediately seemed, after speaking with two doctors, there is no need for us to "run from the burning building screaming."

Brian will go back to Chops in February to get a series of x-rays to see the rate of deterioration and then figure out a course of action. While this is purely premature speculation, it appears as though Brian has full head involvement on the right side, and depending how it grows back, may need no intervention or surgery....but right now it's anyone's guess. There are two very opposite opinions of the left side. One is that it is in the healing phase with a large femoral head with an equally large acetabulum which fit together fine. The other is that it is still in the beginning phase and has multiple fractures that have not yet started to break apart and is still too soon to tell anything from the x-rays.


I joined the Perthes Support group I linked above. They are really a great bunch of people with the common goal of advocacy and knowledge and support concerning this disease, for the patient and for the families. I was very warmly received by them and told them Brian's story. I have been gathering my information and familiarizing myself with the "Perthes speak" so I will have a tiny bit of a clue when discussing things. Between this and all the legal speak concerning the 504 with his school, my head has been swimming.

I decided to try and put it all  on the back burner and get to quilting and doing crafts with the kids and doing some more reading with Brian. We are currently reading three books, The Unicorn Book, Book 5 of the 39 Clues series: The Black Circle and Captain Underpants And The Preposterous Plight Of The Purple Potty People and boy are they all very different. When we got to the chapter about the King in India living in a cave and  marrying a Unicorn who later gave birth to a brown boy with a horn, we decided to start another book rather than explain that to a seven year old. Bestiality discussions even in Mythology are a little out of my comfort zone. :) Kaiya gets bored and fidgets a lot, so her visits with us during  these story times are short. She has a selection of books on her bed that we read throughout the day that are far more interesting to her than her "Bruda's books" (brother’s books in toddler speak.)

Tonight Uncle Mike is coming over, so it's cheese steaks, Rock Band, crafts and fun. I hope you have a great evening as well.

Brr....It's cold outside baby.

Here's a new movie blanket for the cold weather. The kids have been curling up under this happily especially in the morning before school.

I used a tapestry that my parents had given me awhile back and added a piece of repurposed Microfiber blanket from a yard sale. I did straight line quilting, keeping it simple. It measures 35"x70"and has an embroidered denim binding.

I 'm working on a Surfing blanket/quilt now for Brody. I have saved all surfing related clothing and fabric including board shorts, button downs, and some baby onsies from both children for the last seven years to add to this project. I figure it's about time to make him something, and most of the other blankets are all too short for him so his piggy toes stick out and are always freezing. :)

Take care.

Thursday, December 3, 2009

The beginning is the best place to start.

Brian complained of pain for about two months which we had brushed aside as growing pains.  We also thought that maybe he needed a little more excercise , and that was why his legs hurt.  We signed him up for football this year thinking it would be good for him to have some activity during the school year. During the summer Brian is very active either at the beach or pool every day. You can't keep him out of the water. He continued to tell us about the pain but couldn’t really tell us where it was. It seemed to move about his right leg and again we brushed it aside, as it seemed to only show up during unfavorable activities. Then the pain showed up during favorable activities and a limp developed. Brian is a bit on the dramatic side  ( he really should be considered for an Academy Award for some of his performances :) )and we continued to brush it aside until the limp became an everyday thing and started to be more noticeable by myself and his teacher. We finally took him in.

My husband’s  main concern was Leukemia. His cousin had presented the same way Brian did and later was found to have Leukemia in her leg and died shortly  thereafter. This obviously scared the beejesus out of us and in we went.

 His regular pedatrician, whom we love,  had him walk  up and down the hall way and checked range of motion. And told me of the two things he thought it was, leukemia NOT being one of them. Brian had to get xrays on his right and left hip and on his right knee and ankle. He also had a panel of blood tests done including Lyme’s disease and all came back negative or in the normal range. We were referred to CHOPS after they found a "questionable anomaly" on the film.

We visited Dr Jennifer Winnel @ the  CHOPS Vorhees office. We were told on 11-25-09 that he had Bilateral Perthes Disease after being asked if we had dwarfism in our family linage. We don’t. We had no idea what Perthes was. She explained that he needed to be in a wheel chair with no weight bearing activities and to see a nutritionist until further notice. We were then given some paperwork, told to come back in two months with a series of x-rays she ordered and told to call her with any questions. We were shown no x-rays; she did nothing to help us understand what was happening to Brian. We tried to wrap our heads around how we were to keep our VERY VERY active boy in a wheelchair. They delivered an adult sized wheel chair , a chair my insurance company doesn't want to pay for and we were left to look up Perthes and how to treat it, all up on the internet over Thanksgiving break.

We looked at the x-rays on our computer and were at a loss at the fractures and huge gaps where bone should be. We feel like we learned more from the web then from the doctor. I did call to balk about her bedside manner and have follow up meeting on Friday to go over all the information again. I am unsure what it will do for us as I am positive that she will not be the doctor to treat my son. We had a pediatric chair delivered moday night after many many many phone calls and tears.

He's doing great, although he's gone through some boughts of frustration and some tears, and is starting to accept that this is going to be a long and tough journey.   My seven year old has nothing to gauge it by unless you count "MY LIFE IS HORRIBLE BECAUSE I CAN"T PLAY CALL OF DUTY LIKE ALLL MY FRIENDS>  I HATE YOUUUUUUUUUUUUUUUUU!!!"  Holy cow is he gonna get a wake up call.

 I met with the school yesterday  to talk about a 504  Education Plan for Brian . I was met by the Principal, the head of Bussing, the Guidance cousilor,  the school physcologist, two aides and the school nurse. I was caught off guard to say the least.  Apparently many school districts will give parents a hard time about 504's even though it is a federal law,fortunately for us, ours isn't one of them.  They had already started to get things going such as prviding a handcap buss with a wheelchair lift that will run early to pick Brian up drop him off at school , then go on to make it's normal run for the kids in special ed who start school later.  The teachers feel it is essential for Brian to be on time because  it is proven that school kids s who are continually late for school have lower scores and constantly trying to catch up.  Educationally he doesn't need any type of intervention or special education.  They apparenly have realized that they need to hire an aide for Brian as the two wheelchair ramps are at either end of the school and they don't feel that Brian should be left to get to all of his classes alone.  They also realized that in the case of a fire drill or lockdown drill, and possibly in a real emergency that someone had to be solely  responsible for Brian's safety, as is required of all hanicapped children in the school.  I liked that someone thought of that.  I didn't.

Tonight is a parent teacher conference ,some RockBand with the kids and online chat with a new potential specialist in Baltimore.

I'm off to do errands before early dismissal, I'll update so more  later .  Thanks for your kind words and thoughts, much love. Kendra

Saturday, November 28, 2009


Brian has been diagnosed with Legg-Calve-Perthes Disease.   He has had almost all activity restricted and will have to be in a wheelchair for a while.  He is in an adult one now while we are on the hunt for a pediatric chair.    This morning he seems to be more accepting of what is happening to him and  that he NEEDS to stay in the chair or on the couch or in bed.   I made a bag for the back so he can holster his Nerf gun and hold little things.  My folks are sending my Grandfather's wheelchair gloves that he used.  I teased him I was going to cover him with bags and blankets and the like and he can try and sell my stuff for me while at school.  He was not amused. :)

 Today we are going to try and forget about it a bit and go get our tree and start decorating the house.  We have friends coming over for dinner and all the kids can play and do some crafts.   Thanks for all the kind words and thoughts for him and our family.

Wednesday, November 25, 2009

We're off to C.H.O.P.S.

Brian is getting a cat scan and an MRi to find out about this leg business.  I hope they have an answer by the end of business today.  I hate having medical issues around the holidays, as things get shuffled or pushed back and you have to wait and wait for  answers.  Wish us well, and yes mom and sis, I will call you when I know anything.

Saturday, November 21, 2009

Today was about family.

Today we woke around 7 . After a little coffee and lounging in bed talking with the kids we all took our posts and got ready for our adventure to the Camden Aquarium.  The kids both landed on the couch watching Phineus & Pherb .Brody in the kitchen packing the cooler and tackling breakfast duty .  I was on clean clothes & clean kid  duty while laying down the rules for the day.   When everything was packed we headed out to the alley to play hopscotch and toss a football.  We knew the kids wouldn't make the car ride without driving us insane if they didn't get some 'scream your head off get your crazies out' time before picking up Nana and heading out.

The kids were great on the ride. they played games for a while and then we continued our journey through
Captain Underpants and the Big, Bad Battle of the Bionic Booger Boy Part 1.  
Cute book. 

We ate our lunch on the harbor before we went in and talked about the hippos. It was very exciting.  

These crabs were huge .  Japenese giant Spider Crabs

They really did a nice job on the renovations and new exhibits, It was really nice.   I must admit I gave a sigh of relief  though  when  the kids only wanted a crushed penny souvenir rather then something from the gift shop.  It was expensive.


It was great.
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