Tuesday, April 28, 2009

More St. Louis...

We're home now and resettling into daily life. I am still processing the week in St. Louis, but there is a lot to share. We were released from Shriner's on Thursday, a full day early because they managed to get all of the tests, evaluations and meetings completed ahead of schedule. Wednesday and Thursday were especially busy and it took me a whole 24 hours to recover from the pace and activity of the preceding 4 days.

That's ok...we got a lot of information. In short, Oscar and Ruby have mild forms of the disorder. Ruby is the most affected, but they still expect her course to be mild. And, surprisingly, Abe is unaffected. I'm hesitant to believe this without definitive genetic testing (that they are refusing to provide) but I'm working on it. It is good news after all!

For now, we need to monitor Oscar and Ruby's calcium intake as both of their urine calcium numbers came back high. Ruby's especially was way out of range. (And of course I don't know the exact number). So in addition to all we do for Prader-Willi syndrome we also need to watch calcium and VitD. I can do it, but I am admittedly feeling a little annoyed and frustrated that I have more food monitoring on my plate.

The psychologist who consulted with me about Ruby had some excellent insights. I feel like I now have some understanding and direction about Ruby's personality and behavior. Wasn't it just a few days ago that I said I wasn't sure I'd ever trust anyone to give me guidance? Well, I was wrong. I have more clarity, and importantly, peace about her intensity and frustration. I think Ruby senses it too --she has been more articulate and calm these past few days.

Apparently Oscar's scoliosis is at a point that the spine specialist (who I did not meet) recommends that we STOP using his brace. He doesn't need that, or surgery. An interesting outcome that I wasn't expecting and, again, don't fully trust having not met the specialist, seen the xrays or even heard the exact degree of his current curve. I'm waiting for the actual x-ray and analysis to arrive in the mail before I do anything drastic, like pop open a bottle of champagne...or even take off the brace. I am, however, cautiously optimistic. I'd been feeling horribly guilty that I'd missed his 6 month check up by 8 months and counting. I may have dodged a bullet there.

All three kids had OT and PT evaluations, which I found fascinating. (Only a geek like me would actually enjoy this!) Of course I didn't learn too much about Oscar that I didn't already know, but he is a bit stronger and more coordinated than I thought. Ruby is far more advanced in her fine motor skills than even I suspected but has some weakness that we can work on. Abe impressed the OT with his creativity, focus, and diligence but, according to the PT, he desperately needs to stretch! They all have things to work on that we will fit into 10 minute increments twice a day. (add it to the list....)

The two meetings with the research doctors went reasonably well. I asked lots of specific questions and pushed for clarification, some of which I received. I'm just that way -- I'm interested in numbers and facts. I like to see it all, and they were hesitant to share the data. This was the hardest part for me. While I trust their intentions and commitment to helping kids with this disorder, I really need to be more of a partner in my children's care. I need to be able to pass information to future doctors, I need to compare to previous and future tests. I've signed releases so ultimately I will receive all the nitty-gritty details once they do become available.

I did, however, get them to x-ray Abe's arm to make sure it was fully healed. Certainly he is functioning fine but since one number was elevated compared to previous blood draws I wanted them to check. And I also got them to agree to re-draw Ruby's blood. The second draw was far more successful, thankfully. Ruby was calmer and more comfortable and they got a lot more blood. I am grateful, as a couple of my important questions relied on that blood.

So, on to the fun! We raced from the hospital to Busch Stadium in downtown St. Louis where the Cardinals were facing the Mets at 12:40pm. With its pedestrian-friendly downtown location and brick construction, the stadium is reminiscent of AT&T Park in San Francisco, where the Giants play. We were thrilled to be outside watching a great game on a warm sunny day. I taught Oscar how to keep track of the count on the scoreboard, Abe took tons of pictures, and even Ruby watched a little. We went wild went Albert Pujols hit his first, then second, home runs of the day!

On Friday we enjoyed a riverboat ride on the Mississippi and then headed over to the Arch. Abe and Paul shot photos of the elegantly designed steel structure from all sorts of interesting angles and positions. We learned more about the history of St. Louis, and in the bookstore Abe chose a geography book for kids.We then crammed into a tiny tram and rode to the top. Once there, Ruby scampered up the ramped windowsill to peek out the small rectangular windows and exclaimed "I can see the whole world!" She was fascinated. We spent quite a while up there pointing out landmarks, pools on rooftops, tiny moving dots we knew were people, and of course Busch Stadium. I started to get queasy when the Arch swayed. Its engineered to do that of course, but I didn't find that very reassuring at 600+ feet in the air.
We managed to squeeze in some time at the pool as well as some much needed naps in the luxuriously comfortable hotel we reserved at a great deal on priceline. The sightseeing and comfy hotel was the perfect way to end our trip...a way to relax and regain some balance.

We're back in Berkeley now. A full weekend of music performances and baseball games awaited us. St. Louis was a good experience though, and one I hope we won't soon forget. I've already hatched a plan for the kids to "pay it forward", so to speak.

After every blood draw each kid got to choose one item from a well-stocked toy closet. They also received toys and beanie babies for x-rays, pulmonary function tests, pictures, and just for coming. Bingo night was a bonanza with each kid scoring two items. We are going home with 2 Cardinals hats, 1 Cardinal's t-shirt, 2 dolls, 5 beanie babies, 6 plastic safari animals, a puzzle, an etch-a-sketch, a nerf hoop, and a wooden peg game.

While we certainly don't "need" all this loot, it really did help the kids through the hard parts, and made them feel good about their participation in the study. Even Abe is treasuring his treasures. So, we're going to start collecting new and unused toys and books for our local Children's Hospital. We have some things stored away that we can start with, and we'll ask our friends too. We may even solicit our local toy stores for donations. The kids are excited about the idea -- they know how much those small items meant to them.

So, overall, it was a really good trip. And we don't need to go back for another 3 years. The kids can't wait...seriously.


  1. Wow. I don't know how you're not just exhausted with all that you went through and learned -- not to mention the site-seeing! It was good to hear an update and I wish you much more strength as you take the information, process it and make changes. I wonder if all your children might benefit from visits to an osteopath -- my three go regularly and have since they were newborns. If you want any information, just let me know!

  2. I agree with Elizabeth on the exhaustion front. I hope you take a few moments each day just to acknowledge how much you do. We so often forget that part, don't we?

  3. You're both right -- I am starting to really feel the exhaustion and a little overwhelm now too. Thanks for the reminder to step back and acknowledge Kate. I'm "taking the night off" despite all there is to do. Elizabeth -- we have been to an osteopath. Oscar had cranial sacral therapy through his PT when he was little (age 1-2.5?), and then when his scoliosis worsened I took him to see a D.O. in SF one day a week for a year. I know it would be great for all but I think I am waiting for the right local person to magically appear. Perhaps I should get a bit more proactive? Thanks for the reminder. I'd love to know more about what your osteopath does and what you and the kids feel/notice.

  4. Great photos. It sounds as if you had an amazingly good time, even though there was a lot of "business" to take care of. You put a lot of FUN & interest in the mix, with the hospital work, and it shows on your children's faces. It is wonderful to see. I love the idea of gathering toys for other kids. That generosity of heart is a beautiful thing.

  5. I thought of you, Karen, because on the top shelf of the super special toy closet were handmade blankets, some fleece, some crocheted. None as special as the quilts you've posted (I'm biased :-)), but beautiful and made with love. And on the lap of every child in a wheelchair or on a gurney was at least one or two. Such great work you do!