Monday, April 20, 2009

Broken arm: Our count is up to three.....

Yesterday I had a meeting right before church. As I walked down the stairs to the basement, Jake realized I was leaving and got upset. He started screaming and pulling on the gate at the top of the stairs......... The gate opened. :-(

Jake fell about halfway down the carpeted stairs, but it was a pretty hard fall, as he initially began falling head first! We looked him over and thought everything was fine. He was walking, he stopped crying pretty quickly, and he seemed to be moving well. We took him to church for the first hour and then Warren brought him home for a nap. When I got home, and Jake woke up from his nap, he seemed really 'off'. For instance, when he woke up he was just lying in bed, on his belly, crying. Usually he is standing up. Then, when I took him downstairs, he wouldn't stand up from his sitting position, and he couldn't quite manage to pick up the toy he wanted off the floor. I decided to take him in to the Instacare, just to have them look him over. I didn't even know which limb I was concerned about! Was it his arm? His hip? His leg? I couldn't quite tell what was wrong, only that he wasn't moving quite right. The doctor at Instacare was great and we figured out that it was most likely his arm that was bothering him. After some X-rays (where Jake did GREAT, by the way!) we saw the break in his arm - right above his wrist.

I am kicking myself that the gate was up, at all! Jake is very proficient on the stairs, and we have already removed the gate on our upstairs stairway. If there hadn't been a gate on our basement stairway, Jake wouldn't have fallen (ironic, huh!)

When Jake and I got home, the boys were pretty interested (injuries, in a house full of boys are always pretty exciting......) I jokingly said that since Will, Drew, and Jake had all broken their arms, now Nate and Matt were going to have to break their arms, as well. Nate looked at me, very concerned, and said, "Did the doctor say that..........?" I had to laugh!

I called our family orthopedic surgeon (yup, families with all boys need a regular orthopedic surgeon............) and he won't cast Jake until Wednesday. They want to make sure the swelling has had a chance to go down. So, for now, Jake is stuck with this hard splint and sling. I think keeping those on him are the hardest part so far! He seemed much happier with nothing holding his arm stable!

At least the break is not affecting his thumb sucking hand!

Thursday, April 16, 2009

Apple has Fabulous customer service!!! (Assuming, of course, that you don't actually have problems with any Apple products.........)

I. Am. So. ANGRY!!!!
Usually, I am not a 'cool gadget' type of gal. I am the type who waits several years to replace her cell phone because I'm not completely sure I'll be able to figure out how to work a new one! I made an exception, though, when I purchased an iPhone. When my iPod was stolen out of our car, and my cell phone went on the fritz, I decided to splurge. Warren agreed, and my iPhone with the pink case was my Christmas present. I have come to depend on that thing, and love it beyond any reason. It had cool games for the kids (and me!) when we were bored. It took cool pictures. It had amazing apps that could do almost anything. It played music. It had a GPS. And it kept me organized with it's calendar.

I babied my iPhone, always keeping it clean and charged and using a hard plastic case with a screen protector.

On Monday, the unthinkable happened. My iPhone was in my purse as I got out of the car. I bent down to pick something up off the garage floor and heard something fall. My iPhone had slipped out of the pocket of my purse and landed on the hard cement of the garage floor. It took a moment to register that the shattered black glass on the ground was my iPhone!!! I couldn't believe that a gadget meant to be used multiple times per day was so fragile that it would shatter from a 3 foot high fall!

Today I had to go back to Salt Lake for an appointment for Matt. I stopped at the Apple store, certain that they would listen to my sad story, see my *practically brand new* shattered phone, and do something about it! After all, Apple is famous for their amazing customer service. I couldn't have been more disappointed. There were lots of, "I'm sorry's" all around, but the best they would do for me was 'just' have me pay $199 for a new one - the exact same amount I paid for my current one less than 4 months ago. They acted like they were doing me a favor! I'm sorry, but I don't have $400 to pay for my phone every 4 months! I decided that I would go to AT&T. They are the ones who sold me the phone. I figured, at the very least, I would be able to purchase an inexpensive phone to use for now. Well, they were even less helpful. They were also unsympathetic to my cause and the only option they gave me was to either purchase a 'basic' phone without incentives (after all, I still have 20 months left on my contract) - the prices began at about $200, or I could add a line to my current phone, adding $20 per month to my bill and purchase a phone at the promotional price (these started at about $70). Any option, I choose, I am getting totally and completely screwed!

I was just starting to become an Apple fan. Our family owns 2 iPod shuffles, 2 different generations of Nano's, a 60 gig video ipod, a 120 gig classic ipod, an iPhone, and a MacBook Pro. I buy a lot of music and videos from iTunes and our family has spent MANY thousands of dollars on these various Apple products. I am furious that they would do nothing to help me the ONE time an Apple product of mine has needed replacement (or repair, I wouldn't have cared, either way).

As a classic Yuppie, I buy some higher end products. Each and every one of them is guaranteed to my full satisfaction. I have never had a 'splurge' product that wasn't offered with superior customer service. Too bad the iPhone didn't meet that expectation. Just an example, I have a set of glass mixing bowls from Williams-Sonoma. They are also made out of tempered glass (the same glass that shattered on my phone). I have owned this set of 12 bowls for 13 years. I have dropped them numerous times, as I use them daily. None of them has even a chip. None of them has shattered. If they did shatter, even after all this time, do you know what Williams-Sonoma would do? They would replace them - without blinking an eye! That is the sort of customer service I expect from high end products, and one of the reasons I purchase high quality products. The iPhone and customer service that came along with my purchase have been extremely disappointing.

Monday, April 06, 2009

Holy Hand-me-downs, Batman!

This small-ish laundry basket is full of all the things that I have bought for our new little girl. I have only purchased a few things and they have to *really* catch my attention. I've also tried to buy things in larger sizes. Most of that basket is full of clothes sized 18 months, as Gymboree had an excellent rack of darling clothes for $4.79 each, and they even had coordinating pieces! They didn't, however, have a ton of baby stuff on the rack, so I bought about 6 outfits for two winters from now. I'm quite proud of my restraint in purchasing clothes, as a big part of me wants to go CRAZY and buy everything I think is even remotely cute! It is way more fun to shop for girls clothes and accessories than it is to shop for boy stuff!!!!

This photo explains, in large part, why I'm not feeling the need to go purchase a ton of new clothes for this little angel! Everyone keeps giving me huge sacks and boxes full of FABULOUS baby girl clothes! Most of the clothing in these bags is for up to SIX MONTHS OLD - seriously. She will NEVER be able to wear all of these clothes. If I changed her outfit 3 times per day for 6 months, there would still be things in these bags that were never worn. To give a bit of perspective, I just cleaned out Jake's drawers and gave everything from his first year to a gal with a baby exactly one year younger than Jake. His entire first year wardrobe filled 2 sacks, and they were packed pretty loosely. Now I've got, what, six sacks for our baby girls first 6 months!?!? Crazy!!! Now, don't get me wrong, I'm excited to have such a plethora of pink to choose from, I think I might just need a way to share the love! Does anyone need any baby girl clothes..........?

Wednesday, April 01, 2009

A picture to explain our panic.....

This is a graph I (okay, Warren actually - I'm a dunce at Excel) just made of Matthew's weight gain over the past 18 months. Keep in mind that before his diagnoses, his weight also increased. That was one of our only indicators that something was wrong - Matt went from being in the 50th percentile for weight and 75th percentile for height (where he had been since birth) to shooting off the charts in both height and weight. In hindsight, that was a sign of his hypothalamic brain tumor, but at the time we just worried he wasn't getting enough exercise! Anyhow, back to the graph. We've got a pretty good record of Matt's weight since diagnoses because we track his sodium levels along with his weight. I went back and looked at his weights over these past 18 months and made a graph. You can see his gradual climb of 25 lbs. the first year after diagnoses (still extreme), but once you hit his surgery date at the first part of December, you can see the almost unbelievable 25 lb. spike to now!

Meeting with Dr.Lustig was very reassuring and very refreshing - although it did leave us with a ton of questions about which direction to go with Matt's care. Dr.Lustig is *the* person researching hypothalamic obesity, and he reassured us that there is absolutely nothing we could do to stop the weight gain. We have had several people tell us that Matt just *HAS* to be sneaking and hoarding food, and that we needed to lock our cupboards. I have had a really hard time believing that because anyone who knows Matt knows that he is the most honest child on the planet. He has an almost debilitating conscience, is honest to a fault and he says he's not sneaking! Also, I do all the cooking and grocery shopping. I never notice food missing and I am with Matt for the majority of his meals. I spend 90% of my life in my kitchen and I have no evidence or suspicion that Matt is stealing food! Dr.Lustig discussed a study done in the 1970's in which 40 children were confined for one month. They were fed a strict 500 calorie per day diet (that's the equivalent of 2 pieces of bread, a piece of fruit, and a glass of milk!) for that entire time. At the end of that month EVERY SINGLE ONE OF THEM had gained weight!

Dr.Lustig has discovered a connection between the way the hypothalamus is damaged and the messages it is sending to the body in individuals with this disorder. When you eat, and create fat cells, those cells have something called Leptin inside. When you have a lot of Leptin (fat), your Vagus nerve (which goes from your brain to all of your organs, including the stomach) tells your brain that you have a lot of energy. It tells your brain to make you feel full, and it tells your brain that your body is free to USE that energy - for exercise and such, but also for basic functions like sweating, maintaining body temperature, etc.... For some reason, in people with HO, their brains get the message that they have NO Leptin, when in reality they have oodles of it available. For this reason, the body goes into starvation/survival mode. They create excess insulin to help pack away these calories. So, Matt's brain thinks his body is starving and won't allow him to use the calories that he has stored so amply. This also explains why Matt is often cold and clammy, doesn't maintain his body temperature well, and doesn't sweat (truly - no sweat, even when we've gone on a long hike and everyone is hot and sweaty!)

There are very few options for treatment of this extremely rare disorder. The first is a drug called Octeotride. It suppresses the excess insulin production and has been marginally effective. Dr.Lustig has written several papers and done several research studies with this method. He says it can often help to stabilize weight, but most kids don't lose any weight. It is also a drug that is not approved for this purpose, so you have to appeal your insurance company. The drug is also extremely expensive ($1,600 per month) and difficult to administer. It is a shot and is apparently takes some extra training for the nurses who give it. It is not a practical option for long term, but some people have found it very helpful for the 6 months or so they can remain on it.

The second option is even less well researched. It is a surgery where they actually go in and clip that Vagus nerve - where all the Leptin/brain messages are being mixed up. It has been extremely effective in animal studies (scary, huh!) and they are just beginning to use it on people with HO. Dr.Lustig is doing a study right now, but so far he only has 5 children who have done it. The success with those 5 has been great, but it's not exactly a large sample! By cutting the nerve, the insulin production goes down permanently, there is a weakened hunger mechanism, and the brain can no longer send those confused, "you're starving to death" messages. Obviously, our concerns lie in the lack of history, but with such a small population that has the disorder, I'm not sure we'll ever get a study that thousands of children have validated.

So, that was basically our trip! We've got a lot to think about. Warren will take Matt back the first part of May. I'll be 36 1/2 weeks pregnant. I would prefer to not give birth on an airplane, so I think I'll probably stay home....... although it will be hard, as I want to be there! During that next trip, we can talk more about the surgery, as I'm sure we'll have lots more questions by then! We are also meeting with the surgeon just to get a sense of the reality of the surgery, recovery, side effects, etc.... It sounds like it would be a quick outpatient procedure, done laparoscopically. I just wish there were more options! Even more doctors who were researching this would be great! Everything I google comes up with articles this doctor has written, and I'm not sure I'm really getting unbiased information! :-) I guess I should just be thankful that there is *someone* out there working on ways to help.

Oh, and San Francisco was fabulous! The weather was perfect all 3 days. We wandered Fisherman's wharf on Sunday - eating fresh seafood on the patio of a restaurant that afternoon. Monday was spent in the hospital nearly all day long, although when we left we ate the most fabulous Mediterranean meal. Maybe I was just starving (since Matt had to fast, we all did), but everything tasted so wonderful! Then Monday morning we walked down to Union square, had a yummy breakfast and wandered expensive shops for a bit. When we came back to our hotel we checked out, had our luggage stored, and went to the top of our hotel to this amazing restaurant (Top of the Marc) where we had expensive salads and expansive views of San Francisco. It was beautiful - and who knows if we'll ever stay at that hotel again, so it seemed like something we should take advantage of while we were there! It was a fun, but quick trip. I wasn't all that excited to land in SLC, wearing my capris and spring shirt with sandals only to find *more* snow and crazy cold temperatures! Come on Spring!