Monday, March 29, 2010

Options, options, options..... But what's the right thing to do???

Well, Matt and I had a whirlwind trip to SF a few weeks ago.  It was really quite fun to go with just him.  We were gone for 36 hours exactly.  We arrived Tuesday afternoon and spent a few hours wandering around SF.  We also went out to dinner, to a CREME PUFF shop that was next door to our hotel and then I took him to see Avatar in 3D - there was a theater directly across from our hotel.  The next morning we woke up, had breakfast, wandered around for another hour or two and then headed over to the medical center for Matt's appointments.  After his appointments we caught a cab and headed directly to the airport and home!

(Here's Matt in the cab on the way to his appointments. We were laughing because his hair was blowing and standing straight up!)

Dr.Lustig was happy to see us and teased Matt since last time we had an appointment with him, we had to meet him at the hospital due to them finding more blood clots and Matt landing himself in ICU.  That was an adventure.  This time went much more smoothly.  We went fully intending to schedule a time to do the vagotomy.  Dr.Lustig is still on board with Matt having the vagotomy.  However, as I've mentioned before, it is very experimental - 4 children have had it and have follow up stats for a year.  I guess Matt is part of an elite group! :)  After we met with Dr.Lustig, we went to go see Dr.Farmer.  She is the surgeon who would actually perform the vagotomy.  She still does not want Matt to have the vagotomy.  She thinks he is doing too well to perform such an experimental procedure.  In other words, he doesn't have any obesity related diseases...... yet.  She does agree that the issue of the hypothalamic obesity needs to be addressed and she suggested Lap Band surgery.  It causes a very gradual weight loss and is reversible.  I like both of those things.  However, it is unclear whether lap band will work on kids with HO since their weight gain or loss does not seem to respond to diet and exercise in any normal way.  So, now I'm researching Lap Band.  I just contacted a doctor in DC who authored a study on Lap Band surgery in adolescents.  I wanted to know if any of the participants in the study suffered from brain tumors/injury to the hypothalamus or pituitary.  I heard back from him right away - he seems truly amazing, as well!  None of the subjects in the study had HO.  He is going to call me on April 5th to discuss whether he thinks Lap Band might be a good option for Matt.  By the way, isn't the internet amazing??  I LOVE having access to these doctors that specialize in Matt's complicated issues.  Overall, they are amazingly responsive and kind!

So, now I'm back to the same point I've been for the past year.  What to do???
Do we do the vagotomy? (experimental, permanent)
Do we do a lap band surgery? (experimental in kids with HO, reversible)
Do we just put him on Growth hormone and think about it for a few more months? (may not address weight issue, will likely make him FEEL much better)
Do we do nothing and just let him gain 100 more pounds this year - all the while watching his younger brothers out eat him at every meal....? (not really an option.......)

My decision wavers almost every single day.  Today I'm feeling like Growth hormone is the way to go.  We can see if that helps his weight loss and muscle building and energy.  If we start the GH, we need to wait 6 months before we do anything else to treat the obesity.  Is pushing off treatment a good thing because it would buy us some time?  Or is it a bad thing because we are delaying treatment that needs to be started sooner? 

Warren and I both feel so conflicted!

Monday, March 08, 2010

The good, the bad, and the ugly. :)

Last week Matt had a visit to PCMC to check up on his blood clots.

The GOOD news is that he was cleared to stop the Lovenox shots. He's given himself two injections daily for 6 months - that's approximately 360 injections! He's been a trooper and we figure it's good preparation for the growth hormone that will be started sooner or later and is also given via injection. :)

The BAD news is that if he ever clots again, he will need to remain on Lovenox or another blood thinner (like Cumiden) for the rest of his life. This is because they do not know what caused the clots. Matt has many risk factors. Besides his weight, he is on two medications that increase the risks of clotting - DDAVP and his steroids. Being dehydrated can cause clotting. Simply having a malignancy somewhere in your body increases the chances of a blood clot. Matt's hematologist believes Matt's clots were not due to one single issue, but they all contributed. We shall see! For now, though, he is injection free and we aren't really missing those shots one bit!

The UGLY. Well, I don't really have an ugly! Okay, so this is sort of ugly..... A few weeks ago I called San Francisco to make an appointment with Dr.Lustig - a pre-surgery appointment. His next available opening wasn't until August. His office lady said she was going to see about scheduling Matt for endocrine with Dr.Lustig along with surgery to discuss things - and hopefully get him in earlier than 6 months in the future! Last week I realized I hadn't heard anything back from them, so I thought I would call and check up on things. Apparently, they went ahead and made us an appointment....... for March 10th! Don't you think we would have liked to know this? We ARE flying in from out of state for the appointment! Thankfully, we were able to get a quick flight & hotel and Matt and I are going to SF this week. Warren was already scheduled to be in Chicago for work, so he can't make it to SF. I'm anxious and excited to speak more in-depth about the surgery and schedule a time for it to happen. Now that we've decided to go ahead and do the surgery, I'm anxious to get this show on the road! Matt seems to be doing very very well at the moment and I think it's a good time to do this minor procedure.

Randomness alert, Randomness alert!  Absolutely not relating to the above information at all, this is our new, wildly entertaining time-waster. On our iPhones, we have this app that lego-izes any photo. You can take a new photo, or use a photo already on your phone. Awesome, huh?!? It also makes a very satisfying clicking sound when you push the button to turn your photo into a lego collage. The very best part is that the app is free. Yea for free entertainment!

Monday, March 01, 2010

All about ME!!!

My name is Audrey.
I am 9 months old (I know, my mom can't believe it, either!)

I have two teeth.

I love it when my mommy puts my hair in pigtails - everyone says it's sooooooo cute!

Daddy is always saying mommy is, "out of control" when I am wearing fancy things like this coat. I don't know what he means.........

I am almost mobile. I just can't quite figure out how to make myself go forward!

I love feeding myself - pureed foods are SO yesterday!

My Lacey blankie makes me happy (Lacey is a very nice friend of mommy & daddy and she made my favorite blankie). I also love my Violet. She sings me to sleep every night.

One day mommy tried curling my hair with sponge rollers. Let's just say it wasn't a good look for me.

I pretty much have everyone wrapped around my pudgy little finger - especially Grandpa Ray!