Life with little boys (and a baby girl!)

Hey at least I got around to posting about Halloween....

2009-11-08T09:03:00.010-06:00

Better a week late than never, right? Right?

Here's 'Super Baby!' (In hindsight I should have dressed her as a monkey with a tutu and called her 'monkey princess' since that's Warren's nickname for her - don't ask. He'll just have to be willing to pay for the therapy.)

Batman was a little strong willed about wearing his treat bucket on his head. I have very few photos of him bucket-less, and, believe it or not, the one here is the only one where he isn't crying (a result of us trying to get him to take the bucket off his head for a picture). Anyhow, he was cute!

And here we have the 'Super Twins!'

Super DREW!

Super Nate!

SUPER TWINS!

These are their extremely EXCELLENT capes. The idea was stolen from my friend Deanne and the capes were sewn by Grandma. I would say that Grandma 'helped' me with the capes, but I'm not sure that by watching her sew them I was particularly helpful....

And here's our Rock Star!
Will started telling us that he wanted a mohawk several months ago. I told him that I would allow him to grow out his hair until Halloween and that we would shave and color it into a mohawk. He was SO EXCITED. Here he is getting his hair shaved.

And here is the finished result. His hair had gotten SO LONG!

And last, but not least, here is our Woopie cushion. Not bad for a kid who was in the ICU two days prior to Halloween!

We love Halloween (well, the boys more than Warren and I - parents just bear the brunt of sugar highs and kids who eat themselves sick). This turned into a great one. We kept it simple and it was fun.

A big bad adventure

2009-10-29T23:26:00.004-05:00

Well, we are back from San Francisco. To say that this trip was a bit of a fiasco would be an understatement! The plan was to arrive Tuesday morning, meet with UCSF neuro-oncologists Tuesday afternoon, meet with the Radiation oncologist Wednesday morning, meet with the Pediatric endocrinologist Wednesday afternoon, and then fly out Thursday morning. It was going to be a quick trip. All went according to plan for about the first half of the first day.........

We arrived Tueday morning, and spent a few hours wandering around Union Square. After lunch we headed over to UCSF for Matt's appointment with the neuro-oncologist. We waited for over an hour and a half. That's not such a big deal - I never mind waiting, as long as the doctors take a lot of time with us. This appointment went very well. We talked about Matt's diagnoses and treatment history. There were actually two doctors and they told us that the treatments Matt has had so far are exactly what they would have done there. That was very reassuring! We also talked about treatment options, should Matt's tumor begin to grow again. The appointment was coming to a close and the doctor was performing a neurological test on Matthew. She wanted to watch him walk and noticed him limping a bit. She had him take off his socks and shoes and examined his legs and found his left leg to be swollen and red. She suspected another blood clot and so sent us across the street to the ER.

Sigh.

The ER was, well, interesting, I suppose. Let's just say that the ER in a big city made me REALLY miss our little Primary Children's Hospital! For one thing, UCSF is not a children's hospital. It is huge and the ER sees some crazy stuff. There's lots of security and signs everywhere telling the staff how to deal with homeless people, drug addicts, and people with the flu. Matt was taken up pretty quickly for an ultrasound of his leg and, sure enough, a clot was found. Long story short, we arrived at the ER about 6 pm, I left at 10:30 pm to take Audrey to the hotel once we learned that Matt would be admitted, and Matt didn't get a bed in the hospital until 3:00 am. Warren was not amused.........

The protocal at UCSF is that patients who are receiving IV Heparin (which they use to treat blood clots) must be treated in the intensive care unit. Wednesday morning, I called the answering service for the radiation oncologist to pass along the message that we would not be able to make our 8:30 am appointment. We spent all of Wednesday in the ICU, trying to convince everyone we spoke with to let Matt go. :-) Hanging out in the ICU of a hospital in another state, during flu season, with an infant is not exactly a great time. Thankfully, they kept Matt in an isolation room and they did allow Audrey to stay with us (infants who are not patients are not allowed in the ICU at Primary's). During the stay, it was found that for some reason Matt's Lovenox levels were not right. He was on the very low end of the therapeutic range last week but when they ran the labs again, his levels were not in therapeutic range. It was decided to increase his dosage of Lovenox.

Miraculously, the last doctor we were to meet with, Dr.Lustig, happened to be the attending doctor the night we were in the hospital. Even though we had to miss Matt's clinic visit with him, Dr.Lustig was able to come up to the ICU and meet with us right there. Ultimately, even though the trip didn't go as we had envisioned, Matt was able to meet with two of the doctors we had scheduled, and the other was able to call us and we had a telephone conference. It all worked out! I'm so thankful they found the clots. It was quite a good catch, as we hadn't even been visiting them for that purpose. It was a blessing!

Matt was released after only about 48 hours in the ICU. While we were in San Francisco there was a problem with the Bay Bridge and it was closed. Of course, the Bay Bridge is on the way to our airport....... Between a stay in the ICU, excess cab bills back and forth to the hospital from our hotel, and a $200 cab ride to the airport (we had to go clear around to another bridge), this turned into quite an expensive 'little' trip!

The doctors at UCSF presented Matthew's case at 'Tumor board' the day he was released. All of the doctors we had met with were present. It was determined that they agreed with all of Matt's treatments he has had so far. They wouldn't have done, for instance, a different chemotherapy, or radiation. They also agreed that our plan of not doing anything right now, while his tumor is stable, is the right choice. We will continue to watch the tumor closely and if it begins to grow, we will do radiation at that point. Also, all the doctors agreed that a vagotomy (the surgery that will hopefully help stabilize Matt's weight) wouldn't hurt future options for his cancer treatment. I think we are going to go ahead with the surgery. It seems like a pretty minor procedure that could have very major benefits to Matthew. He has gained 12 kg. since his last visit to SF 4 months ago - that is almost 27 lbs. The potential side effects of the surgery seem less problematic than the side effects from obesity. We pray we are making the right choice. We have considered our options for several months and are feeling pretty comfortable with the decision.

San Francisco here we come!

2009-10-13T23:17:00.002-05:00

Matt has a follow-up in San Francisco with the hypothalamic obesity specialist in two weeks. For awhile now I have been feeling like I wanted to get another opinion on other aspects of Matthew's treatment for his cancer issues. UCSF is a brain tumor consortium hospital and I wondered if they might have some different treatment ideas for Matt's unique set of issues. I have put off making the calls to arrange a visit with other clinics at UCSF and decided to call today even though I was pretty sure it would be too late to make the arrangements. I was so excited when I started to call around and found that everyone was really willing to make things happen for Matt! Now, over the span of two days, Matt will meet with the pediatric neuro-oncology practice and a pediatric neuro-radiologist, along with the Endocrinologist we've met with previously. The oncology doctors will review Matt's chemo protocols (they call this his 'roadmap') that he has already done. They will discuss any treatment options we may have overlooked and will recommend a course of treatment. Then the radiologist will discuss Matt's radiation future. We are most interested in meeting with her because she will be able to talk to us about whether the surgery for the obesity would be a bad idea in light of the future radiation treatment Matt may need. We will discuss which type of radiation would be most beneficial for Matt's particular case and determine whether SLC has the capability to perform that radiation. Some larger centers have different fancy radiation abilities. We'll see what might be best for Matt. Lastly, we will be meeting with Dr.Lustig to discuss the vagotomy surgery for weight management. It will be a whirlwind of a trip but I am so excited to meet with these specialists. I feel so thankful that everything worked out so smoothly. It is meant to be!

A girl in a house full of boys....

2009-10-11T17:47:00.003-05:00

After church, Will was playing with Audrey. Unfortunately, her bow fell off. Fortunately, she had a big brother there to remedy this crisis!

A moment of motherhood perfection

2009-10-09T22:41:00.004-05:00

Once in awhile, amid the complaining, fighting and screaming, I have a moment that makes me suspect I'm not totally ruining my children. It seems that all those family home evenings about loving our brothers (and sister) and doing nice things for them, and sticking up for them when someone is being mean might have sunk in. Perhaps Will was actually listening to General Conference when President Monson talked about true Christian service - you know, the 'warm fuzzies talk'?? Anyhow, the other day William did this for Matt.

Sometimes I forget that my other children are participants in this whole cancer experience, as well as Matt. They are acutely aware of Matt's medical routine. Will knew exactly what medications to set out for Matthew, where they were kept, that he ordinarily takes his evening medications with milk, and that he needed a shot. This is one of the reasons we have decided to allow Matthew to take a trip through the 'Make a Wish' foundation. It promises to be a spectacular experience. We are looking forward to a whole week where we will all have a fabulous time, and hopefully, our 8 and 6 and 2 year olds will forget for a moment that they have a big brother with cancer. Of course Matt is the 'wish child' and he had the experience of choosing his wish and will be the spotlight of the week BUT I feel like our other children deserve the trip as well. Matt's siblings deal with many unanswered questions. And they are totally and completely patient as they deal with Matt's repeated hospitalizations and almost weekly day-long doctor visits two hours away. They remain cheerful and are wonderful for Matthew. They keep his life as normal as possible, and I think they understand their important role better than I give them credit for!

Update!

2009-09-30T22:52:00.003-05:00

So, today Mr.Matthew had a full day of doctor visits at PCH. We went to see his opthamologist first. Good news there! Nothing has changed in regards to his vision and eye health. We do have to go get the 'visual fields test' (this checks his peripheral vision), but that is just something they do every so often with Matt, not something that means they are worried something is wrong.

Later this afternoon Matt had another ultrasound on his leg, looking at the clots. Good news there, too, as the clots are GONE! Yippeeeee! The ultrasound was followed up by a visit to the Hematology/Oncology clinic. It was sort of strange to be there for the Hematology side of things, rather than the Oncology side of things! His Doctors said they were pleased with the way things looked, ran more blood work to check his clotting levels, and we were on our way. I'm not sure how much longer Matt will need to remain on the Lovenox. One doctor said maybe as few as three more weeks and the other we saw said 3-6 more months of treatment........ :-) Gotta love the consistency!

Matt also met with his Psychiatrist, Dr.Martini (I have to say, I think it's sort of funny that his psychiatrist is named Dr.Martini........) We are trying a new medication with Matt. The out of control feelings seem to be getting worse, including a few episodes of him losing it and crying at school and also overreacting to things at home. His doctor wanted to try Prozac - we'll see how it goes!

Can I just say that I LOVE my Mom! She is just marvelous! Today she took off work to help me, as Warren is out of town and the boys were all out of school. The initial plan was for all of us to sleep over at her house last night, and then today I would take Matt and Audrey to the appointments and she would keep the other boys at her house. Well, that plan changed when Matt's school called yesterday because he threw up (poor kid!) When I saw him, I thought he didn't look right and so gave him a shot of solu-cortef (this is the hormone your body makes, but Matthew's doesn't, when you are ill or when you have a 'flight or fight' response). He went up to bed and slept for 16 hours, waking up this morning feeling fabulous with no signs of an illness. I don't know if he was truly ill with some sort of 24 hour stomach bug, or if his feeling ill was due to his adrenal insufficiency. Anyhow, we put Matt to bed and didn't go over to grandmas for a sleepover. This morning, as I was getting ready to leave, my mom called and said their water-heater had gone out in the night, so she was without hot water today! Probably not a great day to have all the grandkids! So, instead of keeping my boys at her house, she came with me to Salt Lake. It was actually really fun (well, maybe she doesn't think so!!!) She took the boys to the cafeteria for a donut during the first appointment, then we all went out to lunch. During the 2nd half of the day, they all stayed in the car and watched a movie, and then came in the hospital and hung out waiting for Matt and I to finish (some volunteer took pity on my mother and came around with a cart full of books. Each boy was able to choose one. I love PCH!) My mom is just so amazing, and so good to me! I don't know what I would do without her help - oh, and the boys love her, too!
Thanks mom!

Bare Lake

2009-09-27T23:30:00.003-05:00

The view at dusk!

Recent developments

2009-09-24T22:53:00.005-05:00

So, I guess I should update the latest about Matt. He has had such a fantastic summer! His central line was removed which has meant one significant thing - SWIMMING! It has been nice to not have to worry about caring for his line.

Bye Bye Broviac! We loved having you because that meant Matt didn't need to get poked, but are happy he can now shower and swim. It was nice knowing you!

Matt started Middle school this year. His school has FOURTEEN HUNDRED kids! I am not kidding! There is only one middle school in our entire district, so the middle and high schools are the same size. Too big, in my opinion. It is a good school, though, full of dedicated teachers. Matt is enjoying it very much. The first week of school he seemed really wiped out, though. I had heard that the kids came home from middle school exhausted, so I thought it was just the adjustment of a new routine and big school. By Friday of that first week, though, I realized something was up and, sure enough, Strep Throat! Poor kid wasn't wiped out from school, he was sick! We got that treated (the butt shot of Penicillin is AMAZING, by the way - less than 12 hours after it was given he was 100% better).

The next week was a short week because of Labor Day.

Tuesday of the third week we received a call from the school reporting that Matt was in tremendous pain and couldn't walk. Of course Warren and I completely freaked out. The school called back moments later and said the pain was in his leg. He had been complaining of pain in his knee for a few days, but it seemed generally mild and we assumed he had pulled a muscle or something. Well, Warren went to pick him up from school and was startled by how much more pain Matt was in and took Matt directly to the Emergency Room. At this point, we were still assuming it was a pulled muscle, and I was worried about surgery for something like a torn meniscus or other such injury. At the ER, the doctor wanted to rule out the most serious of things that this pain could possibly be, and sent Matt for an ultrasound to confirm that he didn't have blood clots. No one was more surprised than the ER staff when it was discovered that the pain WAS from clots! It is really rare for a child to get blood clots, but we've learned that Matt is exceptional in every way! ;-) That evening ended with the adventure of Matt being transferred to Primary Children's Hospital via ambulance. He was put on IV Heparin and many tests were run to determine whether Matt has some sort of genetic clotting disorder. We are still waiting on the results of 3 of those tests, but the first two came back negative. Matt spent the rest of that week in the hospital and Grandma Julie rescued us and stayed with our other boys so we could both be at the hospital with Matt. Scary stuff! Blood clots are dangerous because a small piece of a clot can break off and go to the lungs, heart, or brain. Thankfully, we seem to have avoided that scenario! Now we just have one other thing to mark 'yes' to when we are filling out new patient forms at a new doctor's office. :-) Matt came home on an anti-coagulant called Lovenox. He has to give himself an injection twice each day. I am so proud of him! He does the shots all by himself. His belly looks awful, though! The blood thinner causes bruising so every place he injects has a baseball sized bruise. He says they don't hurt, but they sure look bad! Here's his belly after only a few shots of the blood thinner.

Matt holding Audrey. She was a tag-along on this hospital visit. Nursing babies have to stay with their mama's, even when their mama's have to stay with their big brother in the hospital!

Cute picture of Audrey in the hotel. This time, Warren and I stayed a few nights with Matt and a few in a nearby hotel. Matt seemed very well and stable and just slept all night. We often stay the whole time, but this time felt okay about leaving him to sleep peacefully while we slept more comfortably than is possible on the hospital couches! :-)

Why we love boating

2009-09-24T22:43:00.004-05:00

(Matt had already gotten out of the car and gone up to bed.)

Labeling kids

2009-09-24T22:34:00.005-05:00

I think children are too quick to be labeled these days. Andrew, though, believes that everything should be labeled and took the liberty of labeling Jake (where IS that Drew when I'm working on organizing his closet?!?)

A closer look......

Some Natisms

2009-09-24T21:54:00.006-05:00

Nate is such a wonderful, fun child to have in our family. He has a pretty strong personality (note the 'Believe the Hype' shirt....) that I believe will serve him well in this life. He oozes confidence and is not afraid to stand up for things that he believes to be unequal or not right. I hope I can instill in him the power that personality trait can carry. If used for good, he will be an amazing example to those around him and people will continually be drawn to him. He is a natural leader and we are lucky to have him!

A few weeks ago we took the boat and headed to Willard Bay with just the older boys (Jake and Audrey napped at Grandma's house, which is very close to Willard). It was a fantastic day! We packed a picnic, ate on the boat and everyone had lots of turns tubing and playing in the water. After we were finished boating, we had the boat tied up to the dock while Warren went to get the car. All the sudden I hear a splash and look up to see Nate struggling in the water off the dock - without his life jacket! It is quite deep and Nate is not yet a strong swimmer, although he's had swimming lessons. Thankfully, I just hauled him out of the water and he was fine. After I get him calmed down, though, I asked him what he was doing. Did he fall in?

"I just wanted to see if it was deep," he replied!!!

What a way to test! I think the experience sufficiently frightened him and I'm confident that jumping in lakes sans life jacket will not be repeated (by Nate, at least).

This summer we also headed to Park City a few times. We discovered that on 'off' weekends, we can get a two bedroom condo type room at the Marriot Summit watch (a time-share resort). We took advantage of a great rate and played in the amazing pool, let the children go to 'kids night out' while Warren and I went out to dinner, and just generally had a wonderful few days away. Nate and Drew have learned to ride two-wheelers this year, so we took the bikes up to ride the biking trails around Park City. After their ride, Warren and Nate were in the parking garage putting bikes back on the bike rack. It is just the two of them until a pretty lady walks by and Warren is mortified to hear Nate do this:

That's our boy!!!

A baptism, two birthdays, and a baby blessing!

2009-08-16T21:27:00.006-05:00

Last weekend was a bit chaotic in our home!
William turned 8 the end of last month, and in our church that is when children are given the opportunity to be baptized. Will was so excited for this great day. It was also time to bless Audrey and we decided to have both events the same weekend so relatives coming from out of town wouldn't need to come down two weekends in a row. It was only after scheduling everything that I realized Will's baptism day was also Nate and Drews sixth birthday! It was a fabulous weekend though, spent completely together as an extended family.

I can't believe my baby twins are SIX years old! They start Kindergarten the end of this month. Weird!

Will and Warren before changing into their white baptismal clothing.

Will and his display. He chose what he wanted to bring to show about himself and I think the choices are so cute!

Grandpa Ray holding Audrey right before Will's confirmation.

Audrey, after her blessing.

Our family adoring our sweet girl on her special day.

Four generations.

Sweet Sadie

2009-06-26T01:57:00.002-05:00

Sweet Sadie Huish became a brain tumor angel this morning. My heart is heavy as I think of her family. They had a truly amazing perspecive and spirit. I learned so much about the way I want to be as a human being as I watched them navigate their trial with so much grace and courage - always doing what was best for their girl. Please pray for them as they go through these next hard days, weeks, months, and years. We love you Sadie! You and your family have been in our families prayers for awhile now. We will continue to pray! Thank you for your example and your bright smile, even during those most difficult of days. You were truly an inspiration to so many people!

A few pictures of my girl!

2009-06-04T21:28:00.003-05:00

I still haven't uploaded the photos from my actual camera yet, but I did get some more with my phone. Audrey is getting so CUTE!! I mean, newborn babies have a certain charm, but for the first few days it's a very scrunchy, squished, splotchy charm! :-) Today I think she's looking a little cuter (is it bad to admit I don't think newborn babies are terribly cute......?)

Our BIG announcement!

2009-06-02T22:26:00.003-05:00

I mean, really big. I mean 9.5 lbs. big!!! :-)

Audrey, minutes after birth. Look at that wild hair!!

Yesterday, I was feeling guilty because I was opting for an induction of Miss, "I'm too comfy in here for my own good". She had been measuring small at her 20 week u/s and although a later u/s showed all was well with her growth, I was still convinced she was going to be small. For one, I felt like my belly was a lot smaller than with previous pregnancies, for another, I had only gained 24 lbs., and, previously, I've NEVER gained less than 45.

I came to the hospital at 7:00 this morning. I am VBAC, so the doctor didn't want the Pitocin high at all. He came in about 9:00 and broke my water. By noon, I was in a really great labor pattern and really starting to feel the contractions. I had an amazing nurse who let me move around and was fabulous about getting me things to try. I sat on the birthing ball, walked the halls, used a rocking chair, etc.... Soon after my labor was really going strong, we decided to stop the Pitocin and see if I would stay in labor. At this point I was a 6. Happily, my contractions continued and I discontinued the Pit for the remainder of labor. The rest of labor was spent using a squat bar. I highly recommend this bar that attaches to the bed. It gives you something to hold onto and pull or push against to counter the strength of the contractions. I didn't 'squat' with it at all, but It helped me immensely (and helped Warren's poor fingers, as well!) About 2:00 I began feeling the need to push, the doctor was called, and we began the process of bringing this baby down. Even though I was fully dilated, Audrey was pretty high. Eventually (with a lot of screaming on my part! LOL!) I pushed her out. Her shoulders were pretty stuck, but I DID IT! :-) Once they weighed her, it was clear why she was a little difficult to push out. She was 9 lbs. 8 oz. and 21 inches long!!!! I couldn't believe it! That's 9 oz. bigger than Jake, my largest previous baby.

I am so glad I chose to induce, as I'm not sure I could have delivered a baby who was much bigger! Also, I am thankful I was able to labor without an epidural. I REALLY don't think I could have pushed her out if I was numb from the waist down. It took every bit of my effort and concentration to deliver her!

She is so sweet with black CURLY hair, big chubby cheeks and she already has rolls of fat on her arms and thighs! I'm not convinced she would have ever come out on her own, LOL! She was pretty comfy in there, and obviously eating well!

Audrey, about 8 hours old - she has a BOW although it is blue........ maybe I'll get a pink one tomorrow! :-)

Excellent day and STABLE!!!

2009-05-13T01:46:00.003-05:00

Matt had a slew of appointments today. First an MRI, then a visit with Neurosurgery, then a visit with Oncology. It was wonderful to learn early in the day that the tumor is STABLE!! Gone would be perfect, but stable is excellent - and about as good as it gets for us! Dr.Walker is not recommending surgery at the moment. He also said he would try to hold off on radiation.

We celebrated our good news with a visit to PF Changs for lunch in between appointments. I joked that if we had received bad news, we would have eaten our lunch in the hospital cafeteria! :-)

After lunch Matt had an appointment with Oncology, where he hadn't been in almost 7 months............BAD MOMMY! We got all up to speed with them. They are also recommending we hold off on any treatment as the tumor remains stable. Matt will be having his Broviac removed sometime very soon - like this week! I feel sort of giddy and surreal that we so unexpectedly received this gift of Matt's cancer stabilizing. One day, we were plugging along, fighting this thing with chemotherapy, and talks of radiation and a 4th craniotomy, and now, suddenly, it's stable and we are cautiously going to get on with our lives. It's a very strange feeling! I know that things can and probably will change in an instant, but for now, we will enjoy what we've got!

Surprisingly, all of the doctors we met with were very much in favor of Matt having the surgery to treat his hypothalamic obesity. As I was explaining the surgery to Dr.Walker and we discussed the issues Matt's facing, I mentioned that the surgeon wasn't sure Matt should have the surgery because most of the kids are so much bigger than Matt. He echoed my exact sentiments when he said, "why would you let it get that bad if you had a treatment that you thought might work??" Exactly. Also, both Dr.Walker and Dr.Lemons had heard of Dr.Lustig and thought him to be on the forefront of obesity research and very well-respected in the medical community. This was so reassuring! I have worried and wondered what *other* doctor's thought of Dr.Lustig. Just because a doctor is well published and presents at a lot of conferences doesn't automatically make him a doctor I want performing experimental procedures on my son! It sounds like that's not the case with Dr.Lustig, though. Both of our local doctors felt confident that we were seeing the right doctor for Matt.

More San Francisco, More Questions.

2009-05-10T11:33:00.003-05:00

This past week, Warren took Matt back to San Francisco to talk more about treatment options regarding the hypothalamic obesity. The bad news is that the testing confirmed the diagnoses. Matt's insulin levels during his oral glucose tolerance test were off the charts 30 minutes after beginning the test. It should take about 90 minutes for his insulin to 'max out' and it shouldn't ever get as high as Matthew's was. Also, although we've been pretty happy about Matt's weight gain this month (after all, it was only about 2 kg.!), the doctor was very worried. Because we track his weight in Kgs., it doesn't register how much that would be in pounds. On the one hand, two months ago he gained 5 kg. or ELEVEN pounds in one month. That's why 2 kg. feels pretty stable! However, that is 4 lbs. With a gain of 4 lbs. a month, Matt is on track to gain 50 lbs. over the course of a year. When you put it that way, it's much scarier! Also, because he has had several months of even more extreme weight gain, he is actually on track to gain closer to 70 lbs. this year. YIKES!!!

Warren and Matt also met with the surgeon who is working with Dr.Lustig and actually performs this experimental surgery. Warren was really impressed with her - she is the head of pediatric surgery at UCSF. She was leery of doing the surgery just yet. For one thing, she didn't think that Matt looked 'that bad' yet. The other children who have had this procedure are so big they can't fit in the MRI machine...... I don't know how I feel about that. Do we really need to let it get that out of control before we try something aggressive to help him? I'm uncomfortable with the 'do nothing' route just because we happened to catch the hypothalamic obesity earlier than some other patients do. Her other rationale, though, made more sense. She is also not willing to do the surgery until Matt's cancer treatment is finished. Her fear is that by doing the surgery to treat something secondary to his cancer, that the cancer treatment options will be limited. She is not willing to risk that. So, we have a slew of appointments on Tuesday (MRI's, Neurosurgery, Oncology) and we will try to determine the best course of treatment for Matt's remaining tumor. I am also anxious to get these doctor's opinion on the surgery itself. I trust our doctors (especially Dr.Walker in Neurosurgery), and think it's a good idea to discuss risky, experimental procedures with them! Later next week we also have an appointment with Matt's local endocrinologist. We are going to discuss the possibility of using the medication (Octeotride) to treat Matt until we are able to get more clarity on the surgery. It feels better than doing nothing!

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

2009-04-20T11:23:00.004-05:00

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.........)

2009-04-16T23:08:00.004-05:00

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!

2009-04-06T00:20:00.004-05:00

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.....

2009-04-01T23:25:00.006-05:00

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.

2009-03-18T15:55:00.002-05:00

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!

2009-03-08T20:01:00.002-05:00

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?

2009-03-05T00:38:00.007-06:00

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!

2009-02-26T22:07:00.002-06:00

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!