One Week To Go and Counting....

T-minus one week from the procedure.

The very last thing we had been waiting for was another consultation from Dr. Schoenecker in St Louis who is a top pediatric guy who wrote the study that our Dr Roberts is basing his opinion on to follow this particular treatment recommendation.

The longer we went without hearing from him, the more nauseous it made me. Like what, we were going to stop this train in its tracks? What were we doing here?

I had a really great davining (prayer) session Tuesday morning, and I asked G-d for clarity- and I felt much better after that.

That night I had work and saw clients until 9:05  and when I went to take my phone off of silent- there it was, the expected phone call form the 314 area code.

I sat in my office and listened. The good news, he agreed with everything Dr. Roberts was recommending-

The bad news- he warned me, he said just for my sake and my son's sake- that this is a process that may take a few years and he may be in the brace after the cast for 6 to 18 MONTHS!>!>!>

In some ways I felt free to start planning and move forward, which was awesome. In other ways, I felt suddenly sad, so sad. Its so much for a little guy to have to go through. Its a really long time to not live a "normal" life. It is a hip, and not a heart- but this is also a nice sized chunk of his childhood.

Monday night Nochy has his last Physical therapy session for awhile. Afterwards in the car driving home he said "mommy, can you turn off the music I want to ask you questions about my cast." So we talked, and when we got to the part about the brace- he started crying. He said "I can handle the six weeks in the cast, but why do I have to wear a brace afterwards- why can't I just be better after the casts already."?

So hard, I don't have an answer...

That night I googled- I found this video- which made me cry and made me smile at the same time..

And now I am frantically trying to put plans in place, meals, carpools, picking up my kids, swimming lessons, etc. etc.

Thank G-d, I have amazing friends and family- I don't know what I would do without them.

Last night my husband and I went away for the night to a hotel. In my head I kept thinking of it as the last moment of calm before the storm. 

Its like training for a marathon just got be methodical, planful, and calm- but at the end of the day- you never know what could happen- and we're just going to roll with it.

The Preparation

Tomorrow will be two weeks until the "surgery" and its a weird state to be in. I know I need to be preparing, but I cannot for the life of me figure out what I'm supposed to be doing.

Well, for the first few days I made a lot of phone calls and told a lot of different people about what was happening. Friends, family, teachers, siblings teachers, etc. I felt like I could have recited what was going on in my sleep, even though each time I said it there was a pit in my stomach.

Ironically, I thought I would be the most worried about work, and in truth I am the least worried about that. For the past year I have felt anguished about trying to decide whether I should stay at the agency I work for, should I start a full time private practice, what are the benefits and risks to both, and it caused me a lot of heartache.

I knew, without even saying anything, that my supervisor, co-workers, and the whole agency would stand behind me for this no matter what. And they did! The first words my supervisor said was "anything you need, just let us know."

But I still do need to be clearing my calendar and preparing a lot of things to be able to leave work with a clear head to stay home with Nochy for a bit.

Then I spoke to the head of the OT department at the hospital. We talked about his wheelchair, where he's going to sleep, how he's going to Si tin the car, what he's going to wear, whether or not he'll be able to return to school, etc. It was helpful and scary at the end same time.

Since one of my goals of this blog it to help other people who are going through it- I'll be specific in some of the suggestions I'm getting.

-we're probably moving Nochy downstairs to the den for at least the first few weeks so we don't have to worry about stair (we'll set up a baby monitor so we can hear him and come back down)

-He needs tear away pants, though one mother said she just added snaps or Velcro to her sons existing pants.

-We are going to have to adjust one of the captain chair seats in the middle row of the car so that it leans back and has space for him to have his legs propped up. We're going to need to bring in pillows or something to support his legs in the car.

-Not sure he's even going to fit in his classroom, which makes me nervous, I need him to go back to school, I cannot be home for 6 weeks, but I also really need to take deep breathes and just take this whole thing as it comes.

-he may not fit into the bathroom in our house- which means a "commode" he can use privately in a bigger room- oy, just oy on that one.

-Someone suggested a bean bag chair, that might be a comfortable place for him to sit and to be- so gotta start looking for one of those

I think that's it for now. I feel like a tornado is coming, but I don't know how to prepare properly I also know I have so many family members and friends who want to help, which is comforting- but since I don't know what to do, I also don't know what to tell other people to do.

I spoke to a mother in New York who's son has the same thing and the most important thing she told me to prepare for is to "just stay sane"

I'll have to work on that one

The Decision Part 2

Well me made the decision- and though at times it felt like flipping a coin, we decided to go with the Petrie Casts.

To me one of the hardest parts of this is the not knowing, the feeling like something big is coming but having no details, no certainty, and nothing to "do" about it.

Once we decided I wanted the surgery date immediately. Lets decide, lets get it on the calendar now. But ofcourse, it took dates to get a date from the doctor and the hospital. At one point they gave us the date of next Friday, which besides being incredibly soon is also the day of my best friends eldest son's bar mitzvah- um, yeah, not happening. I was already envisioning walking about and forth 3 or 4 times from the hospital to the bar-mitzvah- but luckily that date fell through and they came back to us with December 3rd.

December 3rd.

In some ways it was such a relief- I rubbed my hands together and thought ok, action time, here we go. I called his teachers, I called our parents, I called our friends, I called our pediatrician, and called and called and called.

Ofcourse, ironically, my husband will be coming home from Israel that day and won't arrive until the next morning. But we didnt have a choice.

That and something else added on to it- have I mentioned we made a trip to Disneyworld in January?

We never take our whole family on trips, its not in our budget. But this year we agreed to go.because my father moved down there and we got some extra money and we found a crazy deal for $100 a ticket and..... so we're going.

But Nochy won't fit on the rides in a petrie cast, and we can't go to Disney world and not let him do anything, and he needs to be in the casts for 6 weeks.....

Six weeks from December 3rd is January 14th, besides being our wedding anniversary- we leave to Orlando January 17th.... phew... if everything goes right.

I'll write more later about all of the preparation we need- but we're rolling now...

The Decision

These past few weeks have been an emotional roller coaster. Its been very hard to stay positive and to basically be put in the task of making a medical decision when we are not doctors.

We saw three top pediatric orthopedist surgeons, and got three very different opinions.

Dr R - is our original doctor. I think I detailed what he said, but just to recap. He wants us to perform an adductor tenotomy. This will give him more range of motion- but then he wants to surgically place in petrie casts. These casts will be worn for approximately six weeks and will keep his legs in a splits position with a pole between his ankles.

We then went to Dr. K who works out of a top orthopedist center in Chicago. She was so nice, had amazing bed side manner, and gave us the easiest option of the three. Do the adductor tenotomy, and then only wear a brace that keeps the legs apart at night. Though that appointment took us well over three hours, I left smiling thinking there was a more positive and easier treatment.

Lastly we went to Dr. J.  He is probably the most connected and in the know on Perthes here in Chicago. He is a part of an International perthes study group, has kids coming into his hospital all the time, and knows all the research on Perthes. He was also so kind with Nochy and though his hospital was a shlep and expensive to get to and to park and I was exhausted by the time I reached his office- he really seemed to know his stuff.

He said two things. One that in order to confirm his recommendation he would need to a specialized MRI with contrast dye to see how much femoral head is involved (it's amazing all the new words in my vocabulary). But he thinks that will confirm that Nochy needs a osteotomy. Which is a procedure where they cut the bone, top it in to the socket, and then put plate and screws in hold the socket in place. This procedure is the most tried and true method with Perthes. Its been researched, its been done dozens of times, and it gets the job done. There would be no cast or brace. Just the surgery, recovery in a wheelchair and then cruthes, and then waiting out the disease til it's done and Nochy can return to regular activity.

After that whirlwind of doctors, we then went back to Dr R with everyone elses recommendation to see what he would say.

Dr. R basically put down a study in front of us which claimed that kids Nochy's age, with his severity of hip involvement did better with a the non-surgical option of petrie casts and the A brace. The osteotomy comes with long term risks, one major one being that his limbs most likely will be different lengths post this procedure, and although this can be corrected surgically as well, it would basically be bringing up down a bath of surgical interventions he didn't feel was neccesary at this time. Dr R conceded how hard the petrie casts would be for us, and that ultimately Nochy might need the osteotomy after the petrie casts anyway, but that he still thinks this is the best course of action.

We asked him is he would do the osteotomy if thats what we decided we wanted. He asked how he could do a procedure on a child that he didn't feel was neccesary, He offerred to write us referrals to having the procedure down with Dr J is thats what we wanted.

My husband thought the young Dr R sounded nervous, and he did concede that for him and this hospital this would be a first- I appreciated his honesty and integrity in helping us discuss the manner.

And therefore this HUGE decision needs to be made.

Rabbi M has been amazing trying to help us get second opinions. Right now we are waiting to  have his records sent to St. Louis to have our case seen by the guy who actually wrote the study Dr R is quoting.

But in the mean time, I think we're going with Dr R. Medically, it sounds like the best thing to do to go with the less invasive surgery first. Even though it will disrupt our lives in a way that will not be fun-

But its amazing what time can do, because making that decision didn't come with the dark feeling of being pulled down a hole like it felt to me a month ago. Now it feels doable, hard, but doable. We just have to hope that G-d is giving us clarity to make the right decision here and give Dr R the divine intervention needed to bring about the healing our baby so badly needs.

Nochy knows about all of this, we have tried to keep him informed, and he ofcourse opted for Dr K and the option that we threw out first. But after that he asked for Dr R and the petrie casts.

So now I am trying to schedule, and then trying to set up all of the dominoes that will be needed to make this happen, hopefully the sooner the better. I am nauseated to say we would like it to happen within the next two weeks.

What a crazy ride, and my motto of "its a hip not a heart" continues- but I would like to see my little boy running down the soccer field again at some point in his life, with G-ds help it should be soon (an by soon, I mean in 9 months to a year from now.....)

Happy Birthday Nochy

Nochy turned 8 yesterday, and today I threw him a birthday party. This may not seem like such a huge deal, but to us it was because I don't do this, I don't throw big birthday parties.

But I asked Nochy what he wanted for his birthday and his answer was clear and fast- he wanted all of his friends over, and he wanted lots of presents. So we gave it to him- really how could we say no....

Because I don't know what this year will hold for Noch. 6 months ago he was diagnosed with Perthes. Seven months ago he started limping. Seven months ago he was playing soccer and basketball and being like any other athletic kid. Six months ago we were told he had a rare hip "disease". Six months ago we were told he can't play sports, can't run, can't jump, and no real clear answer as to when he can return to these things again.

Its been four days since the doctor recommended surgery and something called Petrie Casts. In the pits of our stomachs both my husband and I knew this was coming, but oy. Four days since the doctor showed Noch a picture of the petrie casts, which holds his legs apart with a pole in between his casted legs, and told him it might be anywhere from 6 to 12 weeks that he might need to live like that. Four days since Noch got all teary on the way out of the doctors office and asked "but can I still have a birthday party this weekend?"

So it's been a hard year for Nochy. Who loves running around, loves sports, and is constantly on the move. We had to pull him out of sports camp- and push him around in a big stroller constantly, not very fun.

So here I am the night after the party wondering where we'll be a year from now. There are so many positives here. We're talking about a hip, not life and death, and that's something I'm always clear about. We also are blessed to live in a city with so many top hospitals and specialists. So many other people with this rare disorder have to travel for every appointment and every procedure. We have a family, a community, and most importantly, G-d behind us, and I know we'll be okay.

But its hard to think that we may not know whats coming. We have appointments to see two different specialists to confirm our doctors recommendations, but still who knows. He may need to sleep on the first floor and I may need to sleep down here with him. He may not be able to go to school, or may be able to but only if we hire an aide to assist him. He will need to get around with a wheelchair and, I don't know, I can't even begin to let my mind wander to all of the what it's.

Online there are stories of seemingly crazy and severe stories of kids with perthes- and they scare me. Are they the exception or the rule?

So happy birthday big guy. I love you- I wish for you only health, happiness, and strength this year. I think we're all going to need it.