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!

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.

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..........?

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!

Baby Blues.

No, not the REAL baby blues some people get........ I mean every bit of baby gear, EVERYTHING I own, is BLUE. I'm too practical to go buy all new pink stuff (Warren, keep your comments to yourself, here), but after 5 boys, I don't want people assuming this little one is a boy, too! :-) Silly, I know. I did start out, 11 years ago, making sure I bought gender neutral gear. However, after boy number 2, then 3 and 4, and finally 5 came along, we sort of gave up on the whole neutral color scheme thing. Our infant car seat is black, silver and blue, my jogging stroller is navy, my diaper bag is navy, all crib bedding and blankets definitely have a boy theme and are largely navy, bright blue, or red. We don't own a pink, purple or even yellow sippy cup! Potty chair? Blue of course - actually we own 2 of them.

Sort of a pointless post, but it's what's on my mind at the moment! :-)

Oh, just FYI, Matt is going to see the San Francisco doctor on March 30th! Yippeeeeee! Warren and I will take him on the 29th, he's got appointments most of the day Monday, and then we'll fly back Tuesday. Carolyn (my MIL) and Megan (my SIL) will be in charge of my other crazy boys. Keep your fingers crossed that this doctor is a-m-a-z-i-n-g! I think I've got my hopes up a bit too high!

YIPEEEEE - San Francisco, here we come!

Not for anything 'fun' mind you, but something even better - a specialist who might be able to help Matt with his Endocrine issues! If you google anything related to pediatric endocrinology, especially if it relates to obesity, this doctor (Dr.Lustig) is mentioned. He has written and researched and pioneered a TON of studies on Matt's particular combination of issues. Parents on both my Panyhypopituitarism and Pediatric Brain Tumor boards just revere this man. His name comes up frequently. Well, in November I emailed him asking about a consultation and second opinion on Matt. My request was met with a rather curt reply that basically said we had competent Endocrine care and that he didn't recommend travel out of state to see him. He said he would be happy to consult with my doctor, but basically he didn't want to be involved with Matt's case. I was kind of grumpy about it, but figured there was nothing I could do.

Well, last week we had an excellent appointment with Matt's endocrinologist. We got a lot of things worked out that have sort of been hanging. Matt's weight has increased considerably since his last surgery. I don't believe his diet has changed, and he doesn't seem to be eating an abnormal or unhealthy amount. However, he has gained 10 Kg.(about 25 lbs.) since his surgery in December, and 5.5 Kg. in the past month. That is a gain of 11 pounds. In ONE MONTH! Seriously, you cannot eat that much, or have that sedentary of a lifestyle. I think about it in pregnancy terms - I've gained 18 pounds in 7 months and that is a pretty dramatic weight gain. To gain 10 more pounds than that, in less than 3 months is really quite mind boggling.

Anyhow, Dr.Donaldson (our Endo.) said he doesn't see Hypothalamic Obesity enough to treat Matthew. He has had a handful of patients with the disorder, and has been wholly unsuccessful in treating them, even when he has consulted with Dr.Lustig. He wants to hand over care to Dr.Lustig - and it was even his idea! I was so excited to go home and draft another email, mentioning that Matt's doctor was the one who felt like Matt needed to see him. He replied quickly and said okay. I'm waiting on the details of exactly when we need to book our tickets, but I do know they are working on it. I've been cc'd on several emails talking about tests and things that Dr.Lustig wants done.

I am just SO EXCITED and HOPEFUL that this Doctor has the skills and experience that will help my boy!

Why do we buy them beds?

Last night, as Warren and I were checking on our boys before we went to bed, we found this. Hmmmmmmm, where are Nate and Drew? I know we tucked them in, all snug in their beds........ I remember reading a story, telling them several times to brush their teeth, and listening to them say their prayers.







But here we have an empty bottom bunk.......


And an empty top bunk........


And two 5 year old boys, snuggled up on the FLOOR! :-)

I am clearly missing the novelty of sleeping on cheap polyester blankets, on the hard floor, and sharing one puny pillow. All the while with two comfy beds, complete with cozy flannel sheets within sight! I am getting OLD! :-)

Good News!

This week Matt had his first set of MRI's since his December surgery. We went down to the appointment fully expecting to talk dates for his 4th craniotomy to try to get rid of the rest of the tumor, and then radiation. I have always felt uneasy about radiation. The thought of radiating my 10 year old's brain just freaks me out! I know it might be necessary some day, but will happily push it off as long as possible - forever would be excellent.

Anyhow, Dr.Walker (the neurosurgeon) was pretty psyched to see that the remaining tumor is stable! You have to understand what 'stable' means to our family. Matt will most likely always have some tumor in his brain. It is not in a spot that the doctors can just remove it. Stable is about as good as our world gets! The tumor actually measured a bit smaller than his December MRI showed. This was most likely due to swelling that is present right after surgery, but is gone now. Because of the stability, Dr.Walker recommended doing NOTHING! No radiation, no surgery, no chemotherapy, nothing at all! We have to clear that idea with Oncology, but I don't anticipate them arguing with the recommendation. This is very exciting news for us, as Matt has been on some sort of treatment since August 2007. By the time Matt gets his next MRI's, he will have been free from treatment for 5 months. This gives us a wonderful chance to focus on his Endocrine issues. These are more difficult to manage on a day to day basis, as after every surgery we have to work hard to get him stabilized!

So, basically, unless we see a physical change in Matt that necessitates treatment earlier, we are FREE until this new little one arrives to our family. I think it's a tremendous blessing!

Some sad news, though, my Grandfather passed away last Friday, and we had his funeral service today. He has been in poor health for several years, but it still makes me sad to see his time on this earth come to an end. Matt was particularly sad. With his strong emotions coming through uncontrollably, funerals are very difficult for him to attend. He loved my grandpa, and would often receive coins as gifts from Great Grandpa Willie. Great Grandpa will be missed by our family - and especially by my tenderheart little boy!

Words. Eating them. And sharing them.

Sharing my words:
Today at the grocery store I ran into a friend from high school. It is always surreal to see someone from your past in such an unexpected place! It was fun to chat with her and meet her beautiful daughters. In the course of the conversation she asked what had brought us to Cache Valley. To me, this story is very much a part of Matt's cancer story. We had been living in Chicago, we started feeling pretty strongly that it was time to move closer to family. An opportunity arose (Warren working from home is not a 'normal' opportunity. Very few people at his firm work from home, and it really is an unusual situation) and we moved close to family. Less than 3 months later, Matt was diagnosed with brain cancer, had his first craniotomy, and was on chemotherapy. So, you see how the 'how did you end up here' conversation inevitably brings up the 'my son has brain cancer' conversation? I'm just never sure that I should dump our story on a friend I haven't seen in 14 years! On the one hand, it feels a little 'pity party-ish' to dominate the conversation in this way. On the other hand, I think my feelings would be hurt if an old friend didn't mention something about her child with cancer and I found out through the grapevine. It's so awkward! I'm just not sure what I would say to me if I was hearing my story! :-)

Eating my words:
I've always had pretty strong feelings against over medicating children. I think ADD and ADHD can be mis-diagnosed and that too many of our children are being medicated. I am a big proponent of good mental health and believe in the issues that need to be treated. I just feel like many children are walking around in a medicated daze.
So, of course, in the way that happens the longer you are a parent, I am having to eat my words and admit that sometimes our children do need to be medicated with drugs that I've always been horrified about using on children.
Matt's last surgery has created two new issues. First, his hypothalamus no longer will regulate his appetite. This translates into an almost insatiable appetite. You know that, 'I can't move I'm so stuffed' feeling you get after Thanksgiving dinner? Well, Matt doesn't anymore. His hypothalamus will also make him put on weight even if he is eating a reasonable diet, and his body will not burn calories in a normal way. We are working hard to try to avoid 'hypothalmic obesity' at the moment. Matt entered the hospital weighing 63 kg. on December 11th. Right now he is hovering around 70 kg. That translates to a weight gain of 15 lbs. in less than 2 months. It's scary! We saw the Endocrinologist a few weeks ago and he put Matthew on an appetite suppressant. It does seem to be helping! Hopefully we can train Matt's mind to eat the right amount, even if his body isn't helping to regulate that at all!

Our 2nd issue is concerning Matt's 'frontal horn'. Apparently, this part of the brain helps control and regulate emotions. Matt no longer has a frontal horn. The neurosurgeon thinks it was eaten away by tumor. Ever since Matt's diagnoses we've noticed some mild mood lability - getting overly upset about small things, etc.... We feel very lucky because some brain tumor or brain injured kids get really angry or really mean or really violent. Matt isn't that way at all. He just can't stop himself from getting extremely upset about really small things. For instance, the other day he misplaced his shoes. We were looking for them and I saw that they were under the table. When I called Matt over to show him where they were he began sobbing pretty hysterically and saying, "I'm such an idiot - they were right in front of me the whole time! I feel so stupid." It's sort of bizarre to see someone get so upset over lost shoes! Then, the most recent episode happened at school. Apparently the computer teacher asked the children to only print out one of their book reviews. She said that she would take any extras that were printed out, and she made sure to ask the children to only push the 'print' button one time. Well, Matt accidentally double clicked the button and somehow ended up with 3 extra copies of his assignment. He burst into tears in computer lab, in front of all his friends. When I asked him what had made him so upset he said he was embarrassed because he 'hadn't followed the rules'. I tried to explain that we all make mistakes and that it was no big deal. I pointed out that no one in class had thought it was a big deal, and even the computer teacher hadn't been the least bit upset. He was still devastated that he had done something 'wrong'. That day, I knew we needed help, so I called the clinical psychologist who we've worked with in Oncology - an absolutely amazing resource and wonderful person! He went and talked to the head of Child Psychiatry and they were able to get us in right away. This doctor was so nice. He recognized that the problem was stemming from the damage to Matt's brain and prescribed a low dose medication. He also recommended some therapy sessions which he is going to do. He said it would be helpful to teach Matt some strategies for dealing with these feelings before they make him so upset. I am thrilled! We go back next week for a medication check, and Matt's first therapy session.

So, now I've got my child on appetite suppressants and anti-depressant/anxiety medications. I do think they are a necessity, and I also think we've been seeing results from them both. But, I have sure had to eat my words and re-arrange my feelings about children on both these types of drugs!

Oh, and on a happy note, Matt won at the next level of 'Reflections'! Now his poem is being judged at State! If it wins at State (it is one of 20 entries for his age group), it will go onto Nationals! We are so proud of him and excited that his writing is receiving recognition. It's so good for him!

Funny, no?

I was just sitting with Matt and Will at the kitchen table while they complete their homework. As I was correcting Will's math assignment I came across this question:
60 seconds make one:
60 minutes make one:
24 hours make one:

Pretty straightforward stuff. Here was Will's answer:
60 seconds make one: minute
60 minutes make one: WHORE (misspelling hour)
24 hours make one: day

Perhaps it's my lack of adult conversation (Warren has been travelling a lot and is in Chicago right now), or my dirty mind. I don't know. I do know that it made me laugh out loud....... and it's not like a joke I can share with my 7 and 10 year olds. So, here I share my warped mind and confess that sometimes my children's homework makes me laugh. :-)

What an amazing kid!

A few months ago, Matt received the application to enter the 'Reflections' contest. Matt is a really amazing writer. Seriously, I don't think I wrote as well as he does when I was in high school! (insert sarcastic commentary on my high school education here)...... He has been working on a trilogy of books since last year. So, in the year he's had malignant brain cancer and short term memory loss, he has also written 3 long books (about 40 pages each) that are really engaging and fun to read. So, anyway, back to Reflections. Matt wanted to enter book 1 of his trilogy, "The quest for peace". We got all set to submit it and realized that for literature there is a word limit. Darn. Matt was upset, so I encouraged him to write something else. He came up with this poem (the theme for the year, was "WOW!").


Baby Jake

This marvel, my brother, he's better than any other.
He's cute, loveable, and extremely huggable.
I love him, as he loves me,
It's because we're family, you see.
Jake's cute and gentle, so I write about him with my pencil.
My littlest brother, one of my best friends, the love that we share just has no end!

I still remember the day Jake was born.
It was during the evening, not early morn.
When I first saw this small child, I thought,
"He's my brother, so tiny, meek, and mild."
But as I watch, Jake is growing each day.
In fact, he has even started crawling away!

Jake's growing and watching, so each and every day, you can bet that I'm trying to choose the right way!

Jake is a wonderful gift, no doubt.
Sometimes I wonder how I could ever be without this baby,
which Heavenly Father has given to me to take care of,
and hope he grows up to be like me!
This tiny boy grows so fast each day that I - I just don't know what to say
except........
WOW!!!!!

A few weeks after Matt submitted his poem, he told me they had an assembly for Reflections. He said he had been asked to read his poem, but that he hadn't won anything. Oh well. However, a week or so ago, I received the school newsletter that said Matt had been one of the first prize winners in literature for his school. The next day, I received a letter inviting him to a district wide awards ceremony that also mentioned he had not only won at the school level, but also the city level! Then, just on Sunday, we received a telephone call that said his poem had also won at the regional level and was going on to be judged at the State level! I am so proud of him!

I was really worried when I found out Matt had won at the school level, but hadn't realized he had been chosen as a winner. We're always worried about Matt's memory, if he is missing things at school, etc..... and for him to 'miss' something like this is pretty significant! Once I spoke with the Reflections coordinators, though, I felt a lot better. They said that at the school level, they don't use 'winner' language. Every child gets recognized. She said that she didn't think it was strange for him to not realize he had won. That made me feel so so so much better! Now I can just help him enjoy his success!

I think boys and girls might be different.......

This photo was taken with my phone by William. He sits next to Jake in the car and faces him, as Jake is still rear facing in his carseat. I thought it was a great photo!

Since we've found out that our baby is a GIRL, I have been thinking a lot about what will be different about raising her. It's sort of a strange thought, as so much of my identity is wrapped up in being the mom to all these little boys. I know what to expect at various stages, what to ignore, what to correct, what to laugh at, and what to cry over. Of course my boys all have unique personalities, strengths and weaknesses, but there are some constants that I feel I can depend on.
One example: about the age of 5, we have worried with each of our boys that they need to get their hearing checked! Matt went from a very responsive 4 year old, to a 5 year old who seemed to not hear us a lot of the time! In retrospect, I think he was just discovering the world around him and was very able to tune out the rest of us! Will was the same way - and we actually did take him to get tested. Of course the test turned out perfectly. When my mom spent those days with my boys while we were in the hospital with Matt, she was very concerned and wondered if we have ever thought about getting Drew's hearing tested. We just laughed. Hopefully, he doesn't really have a hearing problem!

Another example, here is Jake with a little farmer doll my mom and dad got him for Christmas. He really loves the doll, but there is absolutely nothing nurturing about the way he plays with it!
Here he is holding the doll and reaching for something.


And here he is whacking the heck out of the doll with the stick to his stacking toy.


I'm worried about being patient and nurturing to a little girl. My parenting style is pretty militant, ("Boys, shoes, NOW!") which my boys respond very well to. They know we love them, we laugh and play a lot, but there isn't a lot of 'touchy-feely' that goes on. It's easier to get boys to open up over a video game, not a heart to heart sitting on their beds! There's lots of wrestling, lots of physical activity, lots of noise. I hope I haven't de-sensitized myself too much from girl stuff! I hope I can be sweet and loving to a little girl to help her feel secure.

On the upside, I think I've gotten over my weird feelings about shopping in the girl section! Yesterday I went to SLC for a doctor's appointment for Matt. We took Carolyn, and shopped a little bit.


I absolutely couldn't pass up this darling, fur trimmed coat ($12 - Nordstrom Rack), and fabulous shiny red Stride Rite Mary Janes ($8 - Ross dress for less). They should both fit her when she's about 18 months old, so Christmas 2010! Do you know how long I have wanted to buy shiny Mary Jane Shoes? (Oh, that and ruffle bum tights - I'm still working on that one!)

We had our big ultrasound today.....

And, shock of our life (well, 2nd shock after finding out there was another little bean in there at all)......

IT'S A GIRL!!!!!

You read that correctly, it is not a sixth boy for our family. I think the boys were a little taken back. Will keeps referring to the baby as 'him' and saying things like, "mom, if this baby is a boy, let's name him......." Perhaps the finality of the gender hasn't quite sunk in for him. :-)

We decided to let the boys come with us for the ultrasound. We've never brought our children before, but they were interested in coming, and I thought the older 4 would enjoy seeing our baby. They really thought it was neat - especially when the tech put the machine on 3D. The boys said she looked like an alien - LOL! After she had done all the measurements and checked and double checked the gender (without telling us, but Warren and I have seen enough boy ultrasounds to be pretty sure this baby was missing some, um, parts) the tech asked the boys, "so what are you boys going to do with a baby sister?" The boys were shocked - it was so cute!

I'm feeling a little bit overwhelmed. I went into a store this afternoon and was browsing the baby girl stuff. I couldn't even begin to decide what to buy - so I left empty-handed! I felt like an imposter in this section of store I've ignored for 11 years now. I'm sure I'll get over that feeling pretty quickly. I'm also feeling oddly naive. I've sort of felt like I was getting good at this parenting thing (some days......) and with boys I have a general idea of what to expect and what to do. I am so nervous about how a girl will be different! Don't get me wrong, I'm excited, but anxious!

We're Home!

They finally released Matt from the hospital late this morning. It is such a relief to be back in our home! I am so excited to sleep in my very own bed! Matt seems to be very happy to be here as well. He just looks better when he's not in a hospital bed. He was able to get all cleaned up and has enjoyed the attention of his younger brothers. Will, Nate, and Drew have followed Matt around all day like little puppies. He has been darling to induldge them in games of 'Candy Land' and has even given each brother a gift from his stash he received in the hospital. FYI, if your child has to be hospitalized, the week before Christmas is the time to be there! I think our stuffed animal collection doubled, at least! There was always someone bringing around little gifts or something fun to do. Matt was also able to meet some Hockey players, and we were even there when the Jazz came! Unfortunately, Matt was getting an MRI right at that moment and didn't get to meet the players, but they did take a polaroid photo of themselves in his room and left him an autographed basketball.

Thank you again for all of your prayers and, for those of you close by, your amazing help! My mom had the boys the majority of the time (although Aunt Megan took them the first night so my mom could be at the hospital during surgery) and Grandma received tremendous amounts of help. Dinner was brought in every night, people chauffered Nate and Drew to preschool, our walks were shoveled, countless plates of cookies were provided and consumed, and many other acts of service were given to our family (some that I'm sure I don't even know about!) We are so thankful, and we know we are so blessed to live in a place where neighbors and friends reach out and serve one another. We truly have no idea how we will ever repay you - but we thank you from the bottom of our hearts!

Slowly Stabilizing and out of ICU!

This morning, when Warren and I went in to see Matt, we learned he had just been moved out of ICU! We were pretty thrilled. His sodium stayed in normal ranges and was slowly coming up all night. Woooo-Hooooooo! So, he is back on 'the floor' and seems to be resting well and feeling well. His confusion is a lot better, as is his short term memory.
Right now, we are waiting for him to stabilize while taking his DDAVP. They've been holding that because it further concentrates the urine, and would make the low sodium problem worse. He tends to run high, though, because of his DI, so we need to make sure he is stable on the medications he will be receiving daily at home. He just got his first dose a little while ago, so we'll see what happens. Hopefully all goes well, his body adjusts, and we can go HOME. It feels frusterating and hopeless to be stuck here. I have this child who seems like he feels well, looks well, and isn't hooked up to any moniters or anything. We're anxious to get out of here (not that the cafeteria food isn't great............). ;-)
This morning Primary Children's had an AWESOME little concert in the foyer. Jericho Road performed. It was really incredible to hear their uplifting harmonies in such an intimate setting. We are totally buying some of their music! Afterwards, we went up and met them. Matt really enjoyed their songs - especially Homeless from the Forgotten Carols. That's one of his favorite songs and he was thrilled to hear it performed so well.
Here is a photo of Matt with the group.

Change in plans, disappointment, backslide.

Two days ago, when I wrote my previous post, Matt was FABULOUS. Yesterday......not so much. He was tired and lethargic and, most frightening of all, really confused. He couldn't remember what time of day it was when he woke up, ordering Ramen Noodles at 8:00 a.m. because he thought it was evening. He complained of a more severe headache than he had previously, and just wanted to sleep. Neurosurgery ordered a C/T scan right away because of the confusion and headache and that came back perfect, so it wasn't a problem with excess spinal fluid. That was a relief! Once we started getting labs back, it became clear what the problem was. Matt's sodium was falling - and falling quickly. In the PICU and the first little while on the 'floor' (hospital lingo for a regular hospital room), his sodium was running higher than normal. It's common for kids to have low sodium after brain surgery, and Matt's situation is complicated because of his DI, which makes his sodium difficult to regulate anyhow.

Yesterday evening, when his sodium plummeted 10 points in 4 hours - and fell to a dangerous 124, he was re-admitted to the PICU. He spent last night there and his sodium seems to be stabilizing. It is still quite low, but hasn't fallen anymore. Hopefully he will get moved back to a regular room soon!

In light of this change, and even before the sodium began falling so dangerously low, Dr.Walker had 2nd thoughts about going in for another resection so soon. He decided he wanted Matt to be 100% stable with his DI before another surgery happens. So, it looks like we'll be going back home for Christmas, and having another surgery a little later. Dr.Walker was thinking January. We'll see what actually happens! We know another craniotomy is in Matt's future, but the specifics will need to be worked out. Once again, we appreciate Dr.Walkers caution in regards to our son. It is disappointing to go home without completely getting rid of the tumor, but we will try to be patient! Good things come to those who wait!

Amazing Matthew! Fourth day post-op.

Matt is in a regular room now, and we totally scored! This room has a private bathroom (the ones across the hall are shared), a rocking chair, AND a COUCH that sort of unfolds and creates a bed. It's a big improvement over the sleeper chairs we're used to!:-) Matt has had a great day of resting. He only requested pain medication about 30 minutes ago. I am amazed, once again, at how quickly he recovers from brain surgery, and how little pain is involved. For both dinner last night and lunch this afternoon, he has requested that we take him down to the cafeteria. I think it does him good to get out of his hospital room. Dr.Walker also gave the order to remove his 'brain drain' i.e. External Ventricular Drain, since it's not really putting anything out.
Here's a picture of him about 48 hours after surgery. He's still in ICU here. The amazing blanket was made by our friend in Naperville, Lisa. It's cotton on one side, and minkee on the other, machine quilted with two coordinating fabrics around the edges. Matt sleeps with it every night and I love that it's so cozy and comforting while he's here in the hospital.

Dr.Walker has been in several times to see us to discuss Matt's next surgery. It is going to be on Wednesday, rather than Tuesday. We talked a lot about the potential side effects, and the fact that Dr.Walker doesn't feel like he is going to be able to get out every last bit of tumor. This part of the tumor surrounds a very vascular area that controls large motor function - specifically the legs and feet. Dr.Walker is going to be very cautious around that area, and feels like there will almost certainly be tumor left there. Hopefully, radiation will take care of the rest! for this surgery, he is going to go right through the bony part of Matt's forehead and between the hemispheres of the brain. Dr.Walker says he won't even have to go through any brain tissue since, apparently, the hemispheres will separate during surgery. I think that's AMAZING!

Scans

This is the working of the PICU. Matt was scheduled for scans, 'sometime this morning.' Sometime this morning is actually 1:00 in the afternoon. We finally go down to scans around 1:30. Then, we didn't hear results from Dr.Walker until about 4:30. It's as 'in the morning' as the PICU ever gets! :-) Not that I'm complaining - just explaining so you all don't think I've abandoned you.

I can't believe how much tumor Dr.Walker was able to remove. He really did get out all he could see and cleared out all the most sensitive parts. We feel so incredibly blessed that this was able to happen - and that Matt seems fine! He's still been sleeping a lot. The surgery was right in the hypothalamus and so Dr.Walker feels the extra tiredness is to be expected. Matt has been up and talking. He has enjoyed sitting up and ate dinner (chocolate ice cream first, vegetable soup with crackers second).

Now for the sort of bad/surprising news. Because of the angle Dr.Walker was at during Matt's surgery, there was a portion of tumor that he could not see. You can totally look at the direction he came in, and see why this particular small section would have been invisible. Dr.Walker removed all the difficult parts to remove - in the most sensitive sections of the brain, and he thinks the remaining tumor would be much easier. He wants to go back in...... on Tuesday. He will use the same incision - made just a little larger/longer. It seems like the thing to do. I can't see any advantage to waiting until Matt is all the way healed and back in school to do this again. Dr.Walker likes the idea of the incision being still new and everything being fresh and easier to open up again. I can't even imagine how giddy I will feel knowing Matt is TUMOR FREE! So, this afternoon presented another unexpected turn of events. We'll spend the weekend thinking about this and praying that we are making the right decision for Matt. Dr.Walker will come back on Monday, having discussed things with the other neurosurgeons in his group, and having thought about things, as well. But, it sounded pretty much like another craniotomy will be happening on Tuesday! Oh, and by the way, we explained things to Matt and told him that Dr.Walker wanted to perform another craniotomy. Matt didn't even hesitate to tell us that he agreed. He is very excited, as well, to be able to say he's tumor free!

We heard WORDS!

We are currently in the PICU with a very sleepy Matthew. He's not fully awake from the anesthesia. We have had some encouraging moments, though. He has opened his eyes several times, changed position's while he was sleeping, spit out his manual airway thing, squeezed the nurses fingers with his hands, and pushed against her hands with his feet. The best part, though, was just a moment ago when he said, "I need to go to the bathroom." We're pretty stoked!

This is a bit different than what we've come to expect from our previous two brain surgery experiences. Matt's been awake after every surgery - out of it, but awake. Last time, when I walked in and rubbed his arm and asked him how he was, he replied, "I feel like crud!" This time he is much more deeply asleep and less responsive. Hopefully that means he is comfortable and that the rest is helping his body recover.

I'll update in the morning, probably after his MRI.

We talked to Dr.Walker

3:20 - Dr.Walker just came in to talk to us. He felt very optimistic about the surgery and was able to get out all the tumor he could see! It's hard to explain how cautiously elated we feel at this moment! Dr.Walker said the tumor was farther reaching than he had realized. It went all the way around the 3rd ventricle and down to the very bottom of Matt's brain. Matt will have an MRI tomorrow morning and we can see for sure how much (if any!) of the tumor remains. We're still pretty nervous, as Matt hasn't woken up yet. This means Dr.Walker hasn't performed any neurologic function tests. I can't wait to see him and see for myself how he is doing!