Our Neurosurgeon Report from Today

Today we had a neurosurgeon appointment down at Cardon Children's Hospital with Dr. Moss.  We reviewed Ramya's MRI scan from 6 months ago (endocrinology wanted a sedated MRI due to her early puberty, so we had Dr. Moss send in orders for a full spina MRI so that we could coordinate, even though we didn't need the MRI quite yet.  It's always nice to have one instead of two!!).  Ramya's spine is tethered, as we would expect since she has had spinal surgery, but because she is not symptomatic we are not looking at doing surgery to release it.  She has a Chiari II malformation as well, as we expected, but fluid is able to flow around it (her brain stem ;)), and she doesn't have any chiari symptoms, so we are not going to do anything in that area either.  Her pituitary gland looks like something is putting pressure on it, but she does not have any cysts and the fluid levels in her ventricles look good, so he's not quite sure why.  It may be the reason she started going in to early puberty, but there is really no way to know.  So basically, lots of things we expected and nothing that we didn't, no need for surgery, and we don't need another appointment for a year, so I count that as a win!  Yeah!

After the neurosurgeon we grabbed a quick lunch at Chipotle and headed over to our naturopathic doctor, Dr. Vitaro, to discuss the results of some blood tests I had done.  I have a family history of thyroid problems and we felt it was a good idea just to keep an eye on my thyroid.  My overall thyroid level looks good, but when you break it down, I do have an area that is below the "normal" range.  I'm going to start taking a natural thyroid supplement to try and keep my thyroid healthy, as well as hopefully boost up my numbers.  He also tested me for any possible underlying autoimmune disorders, since that can effect the thyroid.  Everything came back negative, so I have nothing underlying going on, which is great!  My only real thyroid symptom is that losing weight takes a lot (I mean lot!) of work for me.  Part of that is the fact that I've had kids, part of that is the fact that I was addicted to graham crackers and milk when I was pregnant with Madi, part of it is the fact that I like food, then of course there's the fact that I'm 32 and my metabolism is slowing down.  Oh, then there is that whole working out thing, and the fact that I haven't consistently worked out in a long time.  All of those combined makes it tough!  I've been eating really, really well the past few months (very little fruit (I actually had none the first month, but now have a piece a day), only quinoa and millet for occasional grains, lean organic meats, and lots and lots of veggies and some nuts... I've basically been following the candida diet), and have lost a little weight, but am having a hard time getting below my current weight.  I've been hovering around this number for quite a while.  I just started yoga and I am hoping that will help.  I'm starting to feel healthier, which is my goal, and for that, I am thankful!

On a totally unrelated topic, next week is Madi's last week of preschool.  The following week is actually the last week, but we will be in Boston getting a second opinion on surgery, so next week is her last week.  The teacher is letting me come in next Friday to do a few fun things with the kids to celebrate.  I can't believe the school year is almost over for her.  Next year she will officially be a homeschooling kindergartener!  I can't wait!!

Please be praying for our upcoming trip to Boston.  We are praying that we get answers on HOW to proceed with Madi's detethering surgery.  Thank you for your love and prayers!

 

Surgery Scheduled and Mysteries Solved

Whew, what a week!  I have so much to catch everyone up on! 

First off, I found a grey hair today.  Ah!

Ok, ok, that's not very big news.  At 32, I guess I can expect to find a few grey hairs here and there.  I wasn't very happy, though!

Now for the real news....

On Saturday, Dr. Zuniga, our urologist, gave me a call about Madi and upcoming surgery.  We talked through some questions I had, and we chatted for quite a while.  I always appreciate a doctor who will call you on the weekends and not rush you; it speaks volumes about the kind of doctor they are.  Basically, before I completely commited to surgery for Madi, I wanted to make sure there was no way around it.  I talked to him about a few different procedures and medication and whether or not they would work for her.  He really thinks, for her situation, the vesicostomy or augmentation are what she needs.  He is very conservative with surgeries, so I know that if he is recommending it, it is really needed.  We opted for the vesicostomy for now.  I scheduled her surgery this week for July 1st (Monday).  We will likely only be in the hospital one night, but we shall see.  We will also get her dye study while we are already in the hospital with an IV in place.  I need to order some cloth trainers, but want to see the positioning of the vesicostomy first.  I'm thinking custom waterproof trainers with a "t" absorbency and a high waist-band.  Now to find someone to make them for us without charging a million dollars.....

On Monday PCH called us to schedule Ramya's dye study, and wanted us in that day, so we headed down.  I know I already blogged about the dye study, so I won't repeat that part.  The doctor called me to talk about the study on Wednesday, and answered some of our mysteries for us.  He said he wasn't worried about the urine getting in to the vaginal cavity.  Apparently it's pretty common and not a big deal. Whew!  Sounded crazy and scary to me, so I'm glad he's not worried.  Sadly, the tubing for Ramya's mitroffanof is just all wrong.  He really thinks it's not fixable.  He said he thinks we are going to have to go in and re-do it all :(.  I'm trying so hard not to be angry, but this is the surgery I asked them not to do on her, but couldn't stop because our adoption wasn't finalized yet, so she wasn't officially ours.  She went through all of that for nothing, sat there alone in pain for nothing, because it's all wrong.  Grrrrr....  The momma bear in me wants to fly to India and yell at someone really badly.  I suppose it's not all for nothing, as it did fix her renal reflux, so I am actually thankful for that.  He also thinks she will need the augmentation surgery, and would do both at the same time, but I don't think I'm ready to do something so big, so I think we will wait a bit, as long as he feels it is safe to do so.  He also wants us to see a general surgeon about her MACE surgery that isn't working correctly, so we head there in a few weeks.  The good news is that he feels we can try to take her off of her prophylactic antibiotic.  We are going to try just our more natural methods and see if it's enough to keep UTIs away.  I'll have to do a seperate post one day about all of the natural supplements we use with the girls.  Anyhow, she is officially off of her antibiotic for now... wooo hooo!

We also saw our naturopathic doctor this week, Dr. Vitaro.  We love Dr. Vitaro and I'm glad, after over 4 months of having Ramya home, we were finally able to get in and see him.  Conner informed Dr. Vitaro that he is like a naturopathic doctor, because he tells me to put on my amber necklace for headaches, instead of using Tylenol.  He thinks he may want to be a naturopathic doctor when he grows up.  He's not sure, though, if he wants to do that, be a karate man, or be a stock or bond trader.  Such big decisions ;).  Dr. Vitaro thinks that thyroid testing for Ramya may be a good idea, because of her early breast development (but normal hormone levels) and lack of weight gain over these 4 months.  I had to drop off some paperwork to the pediatrician so I wrote him a note about this and we'll see what he says.  Dr. V also told me how to try and get the wax out of Ramya's ears (the drops the pediatrician told me to get weren't working), so that's my next adventure with her.

Next week we have two plays we are going to, a few play dates, and some doctor's appointments.  Madi also gets a feeding therapy evaluation to make sure that her pickiness is pickiness and not a feeding/muscle issue.  Hopefully we will get some answers there.  That's all for now; please keep our little Madi in your prayers as we prepare for her surgery.  The doctor says it's a simple one, so we are praying for no complications and a fast recovery!

Our newest venture.....

We have suspected food allergies for a while with Conner.  He gets frequent loose stools, has bad teeth enamel and teeth problems that couldn't be explained through environmental factors, rashes, gets muscle aches, is restless, and has mood changes, among other symptoms/signs.  We could not pin-point the allergy, and finally got him tested.  We went through our wonderful naturopathic doctor, Dr. Vitaro, to get it done.  Our pediatrician's office drew the blood and we sent it off to the lab Dr. Vitaro uses to get it tested.  We opted for a blood test that gives you both IgG and IgE results. Basically, one shows allergies in the traditional sense you think of them and one shows sensitivities.  Conner got all IgG results, which is sensitivities, but to wheat, gluten, dairy (all forms, including casein), and peanuts.  Instead of cooking separate meals or just making Conner miss out on food items, we will all be following a diet that eliminates his allergies (though I will let David keep his peanut butter, and the rest of us will switch to almond).  Madi also has also now has a rash on her face so I am curious to see if our lifestyle change will help her out in that way as well.  I already cook from scratch about 90% of the time, but obviously I will have to completely re-vamp what I cook and how I cook.  Wish us luck on our new venture, and if anyone has any awesome resources, please send them our way!