It's exhausting.

Take care.

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.

Meh...

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.

Finally finished.

Spiderweb quilt 45"x 58 "

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