We're havin' a party

Blackberry Picking

on Sunday :)
Another gorgeous day with low temps. We had a great time at the farm. The first two pictures are from our CSA farm share - they had unlimited cherry tomato picking this week.

Grant's Farm

Had a great day at Grant's Farm this weekend - gorgeous 80-degree weather in July!!!!

A New Twist

Or, more aptly, a curve ball.

This weekend we were certain his back was getting worse. If you run your hand along his side, you can feel the edge of one of his ribs - the tip of it - as if it's not entirely there. The whole back/shoulder area was looking really distorted and we were alarmed. So alarmed, in fact, that we could not sleep that night. We were anxious to call the nurse practitioner and have her order a new set of x-rays.

We reached someone Monday morning who ordered the x-rays for us. John took him back because we ran too late to bring them to my sister-in-law's, and said he stood up nicely for the pictures again. We called and called all day long for the results, leaving messages to no avail. Again, John called all day today asking for an update and no one returned the call.

Just after 7PM tonight the phone rang and it was Jack's surgeon's nurse. She said she had the x-rays and they didn't look worse - they actually looked, despite the likelihood, BETTER. John pressed and asked for a measurement and she put him on hold.

She came back and confirmed the original x-ray was somewhere between 65-70 (yes, we were told 70 at his appointment. The official doctor's measurement came back at 68 we found out yesterday).

She said, "I can't believe it - but it's 55." FIFTY FIVE. This is beyond what bracing could do - bracing stabilizes, at best, and often doesn't even do that. For a curve to IMPROVE - not stabilize but IMPROVE 13 degrees is unheard of!!!!! She said she'd send them up to the doctor and see if his treatment plan changes at all, in light of this new development.

I don't want to project ahead and even begin to think that it means all is right with the world and this will resolve entirely on its own, but I am spinning at the moment.

I can't even comprehend this - it's so not what I expected.

I've just sent an email to the coordinator of the training program to see what, if anything, this means for the casting. I don't know if it means that he's not a candidate - because it's no longer considered "progressive" - or if it just means he could respond even better to the casting. I just - don't know now.

Fifty five.

The power of prayer astounds me once again.

Touched By An Angel

This past week, just after speaking with the doctor in Chicago, we touched base with a woman on a yahoogroup for infantile scoliosis. I was growing increasingly concerned about the fact that the other parents on this group didn't think the Chicago doctor had the right equipment or used the same technique in his casting. She asked me to call her, and within a few hours John was on the phone with her.

It was very hush-hush, but it turns out the european doctor who pioneered this non-invasive casting method for infantile scoliosis was hosting a symposium in August. Guess where?

Chicago!

Guess who she wants up there?

Little man!!!!

That's right. Not only is this doctor in Chicago doing the castings through his clinic, but the guru herself - the physician who dedicated her entire career to serial casting and curing scoliosis without surgery - is hosting a symposium there and, despite being retired, would actually BE Jackson's doctor!!!!!!!!! Words cannot express our hope and gratitude right now. We are guarded, knowing that he still has to be deemed a "good candidate" - but this is so beyond amazing. This could be the answer to our prayers that we didn't even know to ask for. This is the hand of God. Period. The coincidence is beyond anything on this planet.

So, the coordinator of this program emailed me while we were out today, asking that I call her cell. She was working from home and didn't have any of her information there. So, John just got off the phone and Jack is IN. The doctor will be in Chicago August 8th, 9th, and 10th. The 8th is an "exam day" - she has a small list of babies and will be evaluating who is a candidate for casting. On August 9th and 10th they are doing the castings. So, if she determines he's a good candidate, he will either be casted on the 9th or 10th. Heather said she has to talk to the hospital and see if they are a facility that requires an overnight stay after casting or not, and will let us know.

I'm nervous now - I want him to be a candidate so badly. My stomach is all flip-floppy.

I'm SO honored that Jackson gets to go up there. She has a small list of babies who will be going, and she said she called Shriner's today and had them add him. They said, "We have a new patient on here - it's a baby boy, age 11 months, but we don't even have his medical records yet or any of his information." So, it sounds like Dr. Sturm may have gone ahead and put us on the list after I talked to him last week, too. :)

See?

Hand of God.

We're going to Chicago!

I waited what seemed like an eternity for someone to call me back, and the phone rang this morning with Shriner's on the caller ID. I thought it would be some administrative person calling me back. I grabbed the phone with so much enthusiasm that I pulled it out of the wall! I yelled, "NO!" and plugged it back in, and thank goodness, the person was still there.

It was the doctor!!!! He was very friendly (a little defensive when I said, "I heard your team is being trained on serial casting," because they ARE currently casting and have been doing it for some time, he said.) He said, "Well, with a curve like that the horse may already be out of the barn, but I'd be happy to see him." That's all we want - a second opinion, a second option. SOMETHING to do during the next six months that we're waiting anyway for the surgeon. When I told him our surgeon's name, he said he knew him very well - so I was careful to be very respectful and just state that we wanted him to have other options and make sure that we explore everything non-surgical first and foremost.

He wanted me to talk to the applications coordinator to get our information sent up to Chicago from St. Louis, but she was on vacation. Nice timing! She'll be back Monday, though, so no major worries - I just want answers YESTERDAY.

I stressed the urgency to the appointment coordinator and she put me on hold and called the DOCTOR to see when he wanted him in. Like she didn't believe me that time was of the essence in his situation. He said Monday would be fine to get everything scheduled, so she relayed that and told me to leave a voicemail for the coordinator. I asked if we could schedule him and then deal with the paperwork on monday (so we could arrange hotel/transportation/care for the kids) and she kind of barked at me that they couldn't - "No way!" and transferred me.

I listened to this ten minute voicemail redirecting people to different extensions and things and at the end she said, "Don't leave a message on this voicemail box because no one will be here to check it and your call is important to us." But, I did anyway - and told her Dr. Sturm told me to.

So, now we wait - again- tick - tick - tick - but hopefully this will be just the weekend and we'll get some firm information on Monday. The bottom line is - we have options - he's going to be seen, and we can get the professional opinion of someone else. If we need surgery, we need surgery - but if we don't, it's worth it to try.

A Second Opinion

We're not at peace with what the surgeon said.

I've joined a yahoogroup for scoliosis support and some issues have arisen.

These parents are all on this casting bandwagon - there is a euro doc who came here and trained a half dozen specialists on plaster casting to correct scoliosis without surgery. They are scattered around the country (really far from us). It has shown "good results" but sometimes the kids end up needing spinal fusions (where they connect vertebrae, surgically) anyway. It also can cause lung deformity and rib deformity, which we are already facing just from his scoliosis, and possibly in conjunction with the rigid brace. www.infantilescoliosis.org is their website - you can read a bit there.

His surgeon said not to use the brace as much, which we agreed with. But that he wants to wait 6 months to see him again. The group says that it sounds like he doesn't know what he's talking about because Jack's curve can progress, making things so much worse in the future, and that we need to be monitored more closely and have regular x-rays.

I respect that these women have done a ton of research - I do. But, I also seem to be getting conflicting information from the local surgeon (who is THE BEST in the nation, period, at spinal surgery). Then again, he's a SURGEON - and I don't know how many infantile cases he's treated.

WHY can't someone HERE do casting so we could at least sit down and talk to them!???!

****UPDATE****

I talked (and cried) it out with John and we're getting a second opinion. There's a doctor in Chicago shriner's hospital (about 4 hours from us) who is doing serial plaster casting. I called and got his PERSONAL VOICEMAIL.

UNHEARD of.

I'm anxious to hear back from him. I read more today that showed even for those - gosh, I can't even type it without crying - even those who have growing rods and spinal fusion lose 20-30 years on their lifespan because of the decreased lung function. How do I make that decision for my son??? UUGH.

Chicago Shriner's website says he needs to be monitored WAY more frequently than 6 months. They say at least every 4 months.

Also, I dont' understand at ALL why they're calling it congenital when there is no spinal defect. That should - cut and dry - be idiopathic. He also needs to be in the care of a cardiologist and pulmonologist to monitor his heart and lung function and our surgeon's office made ZERO mention of that. :(

I don't fault him, though. He's a surgeon - no one else in that huge series of exam rooms was under the age of 10. He's the best at what he does, but I just don't think THIS is what he does. Scoliosis occurs in 1 of 10,000 births. 80-90% of those are mild and self-resolving. So, Jack is 10-20% of 1 in 10,000. That's a FRACTION. I mean - a tiny tiny population in the country. I just feel like he needs to be seen by someone who KNOWS infantile scoliosis. I don't feel like our surgeon is that person.

I'm terrified of making the wrong decision. This is our baby. He has to live with this his entire life. But, I think making an uninformed decision is the worst thing we can do. Even our primary care doc said on day one, "If this is lifelong, you'll probably want a second opinion."

I'm anxious to hear back from the Chicago doctor. I'm nervous. I'm concerned about leaving the girls. I'm worried about the financial aspect (Please, God, let our other house sell!) and affording hotels and all the things that go with it. I'm worried about our car doing okay up there and back repeatedly. But, we owe it to Jackson to at least SEE if there's something else.

Superfluous Smile

A superfluous smile for this Monday morning.

Here's our family - Simpsons-ized.

Side by side

Here's a picture of the digital x-ray printout and the actual x-ray they took Tuesday at Shriner's in the brace.

Tuesday's appointment at Shriner's

I didn't get many pictures because it was sort of "formal" and I wasn't sure how receptive they'd be. But, I did manage a few pictures here and there.

Monday's Helmet Fitting