Tag Archives: surgery

Removing Bumps

From Family 2012

We’ve been busy! A lot has happened and we’ve been horrible about sharing. So here we go.

First of all, Rochelle and I have declared a holy war on bumps. My mom referred to it as a bump removing quest. If that’s the case, we’re about done with the quest. If we remove any more bumps, our bodies will soon cease to resemble humanoid figures.

First, Rochelle, being a red-haired, fair-skinned lady, had some moles removed to be on the safe side (we’re looking to confirm nothing is cancerous). We’re still waiting for the results, but we don’t feel there is much to be worried about.

Band-aids to the rescue!

While she was there, the doctor offered to remove a mole on her nose that protruded out a little. While not entirely unsightly, she decided it couldn’t hurt to be gone with it. So now she proudly wears a Band-aid where her bump used to be.

Just before she went to see her doctor about the moles, I decided to get my bump removed. Mine was a large cyst on the back of my head, in the right-hand hemisphere. It was about the size of a small marble melted into my skull, though it was obviously soft tissue.

The surgeon who would perform the surgery was wonderful. She reminded me of a good friend of ours; a certain lady living in Colorado with several children who has an imposing figure and a warm personality. We love her and her family dearly, and it was nice having a surgeon who commanded the same level of trust and warmth, especially since she would be the first person to ever cut me open.

The bump on the back of my head had become a long running joke among my coworkers. It quickly became known as “the bump” and it was said to be responsible for my oft appreciated intelligence and problem solving capabilities. Before I went in for the surgery one of my coworkers had me promise to ensure the surgeon would not remove the contents of the bump if it resembled a brain.

I shared this with the surgeon, and she promised that she would leave it alone if it looked like a brain. I saw it afterward, and it definitely did not look like a brain.

My battle wound. It's got medical super-glue on it.

Anyhow, the wound is just now beginning to feel sore, but I am glad to have my first surgery over with. I have a pretty intense irrational fear of needles, and that has been a huge barrier to me getting work like this done. It doesn’t mean I’ll be jumping under the knife for any little issue that needs resolving, but it does mean that I might be more willing to consider surgery now that I’ve had my insides messed with.

Books We are Reading

Brian

Sadly I’ve been on a bit of a reading-break. I’ve slowly been making my way through The Eyes of the Dragon by Stephen King with Micah for his bedtime stories, but I’m stuck at 35% of the way through the final book of the Hunger Games trilogy. I really don’t have a good excuse for not reading, and I’ll probably finish that soon. My next reading project is the Harry Potter series, since that came out in ebook format recently and we went ahead and purchased it for my Kindle. I’ll probably read it to Micah for his bedtime story, and work on shorter Kindle Singles and other free items from my collection in my personal reading time.

Rochelle

Rochelle is currently on the Children of the Mind, the final book of the Ender Saga. She had read the first and third books in the series before, but never all of them together. The whole four book series was on sale for about $15 not long ago, so we got them. That’s a great series. Once she finishes the final book she plans on going to the library to get more books (she took a vacation from using the library, but she wants to get back into it).

How the Kids Are

Micah

From Family 2012

Probably some of the biggest news this time comes from Micah. A few weeks ago I learned that ThinkGeek was going to host an event at their headquarters just an hour from our house.

If you’re not familiar with ThinkGeek, they are an awesome Internet-based vendor that caters to the nerdiest, geekiest crowd out there. They specialize in all things science fiction, bacon, ninja, games, science, technology, and anything else you might be able to geek out over.

So when they posted an application to come out and visit them, I immediately registered. It was going to be a pizza and a movie night, along with a raffle for some prizes, and an opportunity to help them get rid of 33 old eMac computers they once used for their customer service representatives. I thought it could be kind of neat to get one of the eMacs for Micah. Then, in the application, I saw that they would allow you to bring one guest, and that the event was supposed to be kid friendly (“geeklings welcome,” they said).

Rochelle doesn’t know this, but here’s how it played out in my head. She was on the phone. My first thought was to bring her with me, since we do everything together and I knew she liked ThinkGeek. But since she was on the phone and I wanted to submit my application quickly (this is a very popular company, and I knew there would instantly be hundreds of applications), I didn’t have time to ask her if she had any plans for the night of the event. I waited for a minute, but it was apparent she wasn’t going to get off the phone any time soon.

I thought about bringing Sophie, since she’s young and easy-going in public, but I knew the event would go late into the evening, and I thought she might get bored or cranky. Then I thought about how often I saw Micah reading through the ThinkGeek catalog. He did it frequently, often talking about the products in there. I knew he’d love to visit their headquarters, and so I decided to just list him as my guest.

I didn’t think I’d really get selected anyway.

So I was surprised to see that we were accepted just a few days later. I didn’t tell Micah though, I wanted it to be a surprise.

The weekend before the ThinkGeek visit Micah and Rochelle went to a scouting event while I took Sophie out to the Smithsonian Air and Space Museum’s Udvar-Hazy center (more on that below). Sophie really enjoyed the alone time with her dad, and we had a great time. So it was only fitting that Micah got the next weekend with me.

All I told Micah about the event before we went was that it was an extremely unique opportunity, and that out of hundreds of applicants (I didn’t know the exact figure) we were one of only twenty applications to get accepted. In all, there would be just over forty people there. Micah speculated that there must have been a thousand applicants, but that figure seemed a little high to me.

When we pulled up and he saw the ThinkGeek sign in the window of the office building, he said he got so happy he almost cried. He is known for being melodramatic and exaggerating things, but I could tell he was pretty excited.

I didn’t get any photos, but you should have seen him roaming around with the tour group, looking at all of the things he had seen in the catalogs, and marveling at all of the geekiness.

Then we got to the room full of eMacs, and I told him we got to take one home for him. I was the first one in to get a good keyboard and mouse from the box (with a power cord, of course), then I handed those to him to carry and I heaved an eMac into my arms. The nice tour guide lady (@Stephonee) held the door for us and we took it straight out to the car.

Micah thought the movie was infinitely more humorous than any of the other 42 invitees, he spilled soda on himself, he accidentally poured ground red pepper on one of his slices of pizza, and he didn’t get too upset when we didn’t win anything from the raffle (we still got a free computer). He even got to ask one of the ThinkGeek employees how the company got started (you’ll have to ask him about that yourself sometime).

Oh, and at the end we were informed that there had indeed been about a thousand applications for the event. So yeah, Micah was right.

The next day we set up his computer. He has been extremely pleased with it. We are not going to allow the machine on the Internet (for a vast variety of reasons), so I’m transporting downloaded .dmg files (disk images to install Mac software) on a thumb drive to install on his system) from our family desktop, and anything he wants to print will be transferred to the family computer since he won’t have a printer either. He’s got lots of homework helping software, in addition to some fun creativity software, and even a couple of games. I keep my eye open for more free software all the time. Since it’s an older system it’s not hard to find free stuff.

If you know of anything fun we could put on an older Power PC chipset running OS X 10.5 (Leopard), please let us know!

Oh, and a few weeks ago he also learned to ride a bike finally. I spent a couple hours helping him balance and get a feel for how it moved, then after mulling it over in his head for a couple of weeks he went out and tried it on his own and was able to do it almost as though he had never needed lessons. He picked it up pretty quickly.

Sophie

From Family 2012

Like I said earlier, Sophie and I got to go to the Udvar-Hazy center together. It was a lot of fun. It was the first Saturday after shuttle Discovery had been moved in, so there were a ton of people lined up to see her. We got there an hour before they opened the doors. Sophie was excited to see the shuttle, and when we got home she started playing more with a toy shuttle I had picked up a long time ago and given to her.

A couple of quick anecdotes about Sophie: Lately Sophie has taken to making up cute little songs about just about anything. She’ll just randomly burst into song about things that she hears or thinks of. It’s really cute, but sometimes it’s a little creepy. Last night Rochelle was giving me an update about a little girl who had gone missing in the local area. Rochelle said, “they found her, she had drowned in the lake.” Behind us we hear Sophie burst into song, “Drowned in the lake, drowned in the lake. Drowned in the lake, drowned in the lake!” It was a sweet voice singing a pretty melody, but my goodness… What strange things she sings about!

She’s also been a little obsessed with using death, dead, killed, and other similar ideas in her play and everyday communication. At a children’s play-place tonight she and a much younger little girl were playing. Sophie had removed her socks before the other little girl arrived so that she could climb up the plastic slide easier. But with the younger girl I didn’t want Sophie going up while the little girl came down. That could have been bad. So I called Sophie over to me (sitting just a few feet from the father of the little girl) and asked, “Sophie, what do you think would happen if that little girl came down the slide while you were climbing up it?”

Sophie responded, “I could bonk my head, then I would fall over, and I will be dead.”

The father next to me was quite amused, especially since Sophie always delivers lines about death with a mixture of deadpan humor, frankness, and sweetness.

Not a whole lot more to say about that silly girl. She’s obviously been cute and silly the whole time since our last update, but we’ve been pretty busy, and the numbing medicine is really starting to wear off, leaving my scalp in pain and creating an intense distraction that is making writing quite difficult.

Until Later

We try to keep this blog from going so long without updates, but I’ve long since decided that making promises about the frequency of posts is a futile endeavor.

We love you all, and we appreciate all of your readership, prayers, love, and support. Stay tuned. If you don’t like visiting our blog to find that no updates have posted since the last time you checked, you can subscribe to the RSS feed, or you can sign up to get updates in your email inbox using the form in the upper right-hand corner.

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Filed under Milestones

Sophie’s Tumor: Supplemental Information 2

I wanted to get this information written down while it was still fresh in my mind.

Pilomyxoid Astrocytoma

Pilomyxoid Astrocytoma Cells

The degree of our good fortune seems to increase every time we meet with a doctor. The things we learn continuously make the divine guidance we’ve experience on our journey more and more apparent.

Today we met with Dr. Suresh Magge, the surgeon who performed Sophie’s operation. One of the first questions he had for us (other than, “How is she doing?”) was if the metal detectors at the airport had indeed failed to detect her titanium brackets. It seems that he has never actually had one of his brain surgery patients go through airport security between appointments with him. He had always heard that the brackets shouldn’t set off the metal detectors, but our case was the first opportunity for him to confirm that bit of information. Understandably, most of his patients simply avoid travel for the first year or so after their operation.

He had a look at her scar, and remarked that it was healing very nicely. Out of curiosity, I had him describe the size and location of the slab of bone he removed for the surgery, as well as the number and placement of the titanium brackets that hold the bone in place while it heals. He described a hole circular in shape and approximately two inches in diameter, close to the base of her skull. He couldn’t remember if he used three or four brackets (it’s always three or four), but after feeling around a bit he found one of them for me to feel under the skin. It protruded out just a little further than I had expected it to. We’re not talking about a huge bump, but it surprised me.

We showed him how well she’s running and walking around, and he checked a few other indicators of her neural health. Overall, he was impressed with how quickly she had returned to normal operational capacities.

Dr. Magge brought up that he would like to have Sophie in for her first MRI before we meet with Dr. Packer. His remarks about Dr. Packer quickly led both Rochelle and me to conclude that this man is not only important, but is viewed with a kind of awe and reverence by his peers. He is very difficult to schedule for appointments, and it is noteworthy that he is interested in seeing Sophie. Usually he doesn’t concern himself with brain tumor patients who do not require chemotherapy or radiation treatment (these cases represent the vast majority of all cases studied). However, he has requested to see Sophie. So, our appointment with him is on the 15th of March (that was the soonest available when I made the appointment a week ago on the 19th of January).

Next we talked about the pathology report, which is one of the reasons Dr. Packer may be so interested in Sophie’s case. What everyone initially presumed had been pulled from Sophie’s cranium was a PA (pilocytic astrocytoma). PA is the most common type of pediatric brain tumor, and is given the lowest grade in the World Health Organization scale (that 1 to 4 scale I discussed last time). Thus it is considered the most benign (only slightly mutated cells), the least aggressive and subsequently the least likely to reoccur. PMA (pilomyxoid astrocytoma) is a newer type of tumor that is only recently being separated from that grade one PA classification.

Sophie’s tumor, as we previously learned, is indeed a PMA. I mentioned to Dr. Magge that I had found and read a paper on PMAs from the Johns Hopkins staff. He immediately asked if it was written by Dr. Burger. I replied that I couldn’t recall (but I have now confirmed that his name does appear on the paper). Dr. Magge explained that the paper was likely written by Dr. Burger because this man is the leading authority on PMA. Not only did he write that paper, he wrote the text books on the subject. He was also more than likely the eyes at Johns Hopkins that viewed Sophie’s slides and identified her tumor as a PMA. If you read none of the information in that last link, note this tidbit:

Pilomyxoid astrocytomas were first described by Dr. Burger and his colleagues in 1999. They recognized them as relatively rare tumors with some features of pilocytic astrocytoma, but a distinctive microscopic growth pattern, as well as a higher recurrence rate and chance of spreading within the brain.

This type of tumor is still considered largely benign and less aggressive, but it represents its own category because the data suggest that PMAs are (for some unknown reason) slightly more likely to return after removal. While the cells may have most of the qualities of a nearly harmless PA, PMA tumors, when not identified properly, can often return undetected and cause serious problems. Dr. Magge stated that the only difference going forward between a PA patient and a PMA patient is that Sophie will have MRIs slightly more frequently to watch for any regrowth.

While the Johns Hopkins Neuropathology Division seems to be doing most of the major research into PMAs, the Columbia University has set up an entire website resource with tons of information (I haven’t even looked over it all yet).

Remember, every link I provide in the text leads to additional information and reading. If you are interested or need to know more, please follow the links. I make every effort to present the information I gather in as clear and simple a manner as possible while maintaining the integrity and truthfulness that it contained when I found it, but I am not perfect. Please leave comments to add your information, ask questions, and share your stories.

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Filed under Sophie PMA, Supplemental

Sophie’s Adventure

From Cell Phone Photos

Let me tell you. This has been one heck of a month. Our little family has been changed forever. Mostly, our faith has been strengthened and our hearts are full of gratitude in ways they never have been before. You’ve become accustomed to me giving a brief overview of things up top then getting into how each of the children are doing in the “How the Kids Are” section. However, because all of us went through the same stressful events last week, I will give the details here, then give a post-mayhem view of how the children are down below.

What Happened

A couple of months ago Sophie reached the pinnacle of her walking ability. I looked through our YouTube channel and found this video from the middle of October where she jumps at the end. I uploaded three videos that day in which she showed remarkable balance and willingness to run, dance and jump.

I looked for a video of her walking just before last week, but couldn’t find one. What I found was that shortly after those videos from the middle of October, when she began to fall over more often, wobble and refuse to walk without holding a hand, we stopped taking video of her walking. Almost all of the videos of her between the middle of October and now are of her sitting down. The one exception shows a wobbly Sophie walking while holding Mommy’s hand, two and a half weeks ago. At first you might see that video and think, “she’s just unsure of herself because there’s snow on the ground.” The sad truth is, she had lost her balance due to a physical problem in her brain cavity.

Being the wonderful mother that she is, Rochelle was far more alarmed by Sophie’s walking problems than I was. I maintained that there could be less harmful explanations for her problems, but Rochelle feared the worst and insisted that we take her in to the doctor for evaluation, despite a lack of other, (and in my mind) more serious symptoms.

On Wednesday last week (the 16th of December) we went to see our family doctor at Malcolm Grow Medical Center on Andrews Air Force Base. Rochelle’s motherly intuition was right in line with the doctor’s impression of Sophie’s situation, and we were referred immediately to a pediatric neurologist at Walter Reed Army Medical Center (thirty to forty-five minutes away) with an appointment for the next morning (Thursday).

We spent a very long time at Walter Reed having Sophie’s blood drawn, having a CT scan done, and waiting around to find out more. Eventually, they called us in, sat us down and showed us a scan of Sophie’s brain. In the right hemisphere of her brain, down in the area called the cerebellum, she had a frighteningly large black oval area. CT scans have a low resolution, and all they could be sure of was that this dark “mass” wasn’t supposed to be there and it needed to be removed at once.

Sitting there in that cramped office the news that Sophie’s brain had a large dark mass affecting her coordination and balance hit me like a truck. However, in my usual, stoic-t0-a-fault manner, I assessed the situation logically. My conclusion? Our whole family was about to change forever. Nothing would ever be the same. My wife’s reaction was more motherly and woman-like. She had to fight off a strong compulsion to break down in tears. She found the strength to keep the tears back because she didn’t want to stir up distress in Sophie. Rochelle managed to keep the tears back until Friday afternoon after three pm.

Because the dark area in the CT scan of her brain was the same color as the other dark areas that are supposed to be dark, they guessed it was cerebral fluid that had formed into a cyst somehow. They speculated it was probably a blood clot of some kind, but it could also be a tumor. If it wasn’t a tumor, all that she needed was for them to stick a straw in there and let it drain, they said (not in those words, of course). She would need an MRI to rule out a tumor. The neurologist arranged for us to be driven out by ambulance to the Children’s National Medical Center in D.C. for the MRI where there would be pediatric neurosurgeons, something Walter Reed does not have on hand, in case she needed full-blown brain surgery. Also, they had us make Sophie fast in anticipation of the surgery. That fast ended up lasting over forty-eight hours. It made Sophie very, very angry.

The ambulance didn’t arrive until late at night. I met Rochelle and Sophie over at the Children’s Hospital where we were put up in a room until the next morning when they would sedate her and take her in for an MRI. I went home that night, but in the morning I took Micah to school and went back to join Rochelle while Sophie was in her forty minute MRI.

The MRI was over around eleven in the morning on Friday the 18th of December, and she went in to surgery with Dr. Magge (pronounced “Ma-gee”) at 1:30 PM. After the pre-surgery preparations, they officially began the operation at 2:10. It was then that it hit me: my little girl was having brain surgery. That’s a big deal. Knee surgery is bad, open heart surgery is significant. Brain surgery is huge.

So in three days we went from, “Let’s have the doctor check her out just to make sure there’s nothing life-threatening going on,” to, “They’ve cut a slab of her skull out and they’re scraping a tumor out of her brain.” Rochelle and I both shed tears, finally, and we found great comfort in prayer.

My mind went over the events between the MRI in the morning and the surgery in the afternoon over and over during the surgery. An hour and a half after the MRI, Dr. Magge had come to meet us in the room where we were waiting with our baby, who was hooked up to four IVs, a breathing tube, and a zillion sensors for everything from heart rate to blood oxygen levels. He told us that the MRI revealed what the CT scan couldn’t – there was a thin layer of non-brain material (a tumor) surrounding the cyst of cerebral fluid. They needed to get in there to drain the fluid and scrape out as much of the tumor as they could safely get to without poking around too much in her brain. The area of operation was close enough to the spinal column that there was a terrifying list of possible side effects alongside the surgery.

The possible problems that could come up during surgery were worth it though, considering the fact that if the cyst continued to grow, it would continue to squeeze her brain until the pressure would one day become “incompatible with life,” according to one of the neurologists.

Sometime around six pm we were waiting to hear an update from the nurse who was in the surgery. She had been coming out every once and a while to tell us how things were coming along in surgery. However, she hadn’t been out for a few hours, and we were getting anxious. When we least expected it, the actual surgeon walked in to the waiting room. That meant he was done. I had to remind myself to keep breathing. What had happened? Did he have good news or bad news? The look on his face didn’t alarm me, it must be good.

He said that they had been able to remove all of the tumor that they could see, and she had been fine the whole time with no complications. We wouldn’t know if all of the tumor was out until they did a second MRI at a later time, but they had secured the piece of skull with titanium brackets and sewn her up with a single suture that would dissolve in three or four weeks. When Sophie woke up from the surgery she was mad at the world. She was still groggy and cranky, and she was hungry. The first thing she asked for was chocolate milk and bananas, and after a while she began demanding an apology from the hospital staff (“I want say sorry,” she said through sobs and tears).

That night a friend of ours from Church came out to get Rochelle and take her home, and I stayed with Sophie. The evening brought the beginnings of a terrible snow storm (not so terrible for me being from the Rocky Mountains, but terrible for the East Coast). At first the snowfall was slow and beautiful, but by the morning when they began to sedate Sophie for her post-operation MRI more than a foot of snow had accumulated on the roads.

Saturday morning she had her second MRI, then we went back to our room and waited. Sophie was cranky and hungry after waking from the sedation, but I was happy to see her recovering so well from the surgery. She wanted all sorts of things she couldn’t have since we were still introducing her back into a diet of solids. They couldn’t find a sippy cup for her to drink from, so we cut the tip of a bottle nipple wide open for her to use.

From Cell Phone Photos

As you can see from the photo, she was still groggy and angry. She also refused to give up the bottle, probably out of fear that we would make her fast again. Slowly, they began removing IVs and sensors as she proved to them that she didn’t need them. At first she was hesitant to walk, probably because of the IV still in her foot, but once that was removed I let her roam around the room a bit, watching closely to make sure she wouldn’t fall down.

Sometime Saturday afternoon Dr. Magge (the brain surgeon who did her operation) had seen the MRI images from that morning and came by to share them with me. While Sophie slept and a nurse watched her, the doctor took me to a computer to show me what he could see. He reminded me that the radiologist was the expert who would analyze the images and declare the final “reading.” However, being a surgeon with lots of experience in these things, he felt confident that the radiologist wouldn’t be able to find any tumor left. He showed me the before and after MRI scans, and the difference was staggering. There was still a cavity where the cyst had squished the brain, but that would slowly return to its natural form over time, he assured me. The channel that normally drained the fluid that had caused the cyst had opened back up to its original size, and that was the important thing for recovery. He assured me that she probably wouldn’t need any additional surgeries for this instance, and as long as the tumor was benign (as had been his impression when he held the mass in his hands in surgery), she shouldn’t require any additional treatment in the future.

I breathed a sigh of relief, but anxiously awaited the same news from the radiologist.

By Sunday, she was more stable on her feet than before the surgery. We arranged to have someone experienced with winter driving bring Rochelle to the hospital along with her mother, who had flown in Saturday from Mississippi. Sophie had been asking for mom, but the snow storm had closed most of the roads all day Saturday, and even the hospital staff had to sleep in the hospital Saturday night.

From Cell Phone Photos

The visit with mom went well. Sophie held her and hugged her for a long time before falling asleep on her. By later that evening when someone else came to pick mom up, Sophie was much more content (and mommy had painted her nails, so she felt prettier).

Just as a side note, brain surgeons are probably all wonderful people, very intelligent and capable at what they do, but I would never recommend letting one of them cut your daughter’s hair unless it’s absolutely necessary. 😀

By the evening that day, the doctors were talking about possibly discharging her on Monday, as long as she continued to recover so quickly. The only problem was that her last IV in her hand was beginning to hurt. After an hour of working with the nurses I urged them to remove it. They agreed and Sophie felt much better. Also that evening, the official reading of the MRI from the radiologist came in. From what his expert eyes could see, all of the tumor had been removed.

I called my wife and my mother. A wave of relief could be felt rippling throughout my world, in and out of homes everywhere we had family or friends. Through the magic of smart phones and Facebook, I had kept people up to date with as much news as I had, but this was the best news I had shared so far.

The rest of her recovery was still going perfectly. She held down all of the foods we had fed her, and she had plenty of energy between naps and sleeping at night. She didn’t sleep all through the night, but she also didn’t wake up more than should be expected. She was filling all of her diapers with copious amounts of urine, but she still hadn’t had a bowel movement, which was my only remaining concern (and it was minor).

That changed Monday morning. Take a look at this face:

From Cell Phone Photos

She was horribly constipated and required some assistance getting the feces out. I had to call in a nurse after looking under her diaper and seeing what was trying to get out. Without being too gross, let me just say that the process more closely resembled child-birth than a normal defecation, only without all the blood.

After that she felt noticeably better and she was exhausted. I’m getting ahead of myself though.

The best part of Monday was when the doctor visited in the morning and he mentioned that she would “possibly” be discharged that day. When I asked him what made the discharge possible rather than definite, he said it would be up to me. So, knowing that Sophie was recovering nicely and she seemed to be mostly back to her old self without showing any signs of being sick or having additional problems due to the surgery, I said I wanted to take her home as soon as possible. He said he could have the paperwork done in half an hour.

I rejoiced. So, after the laborious bowel movement, the nurse brought us the discharge paperwork, loaded Sophie into a wheelchair, and we went down to the parking garage where I couldn’t find my car. A kind parking attendant walked all over the garage in the cold winter weather pushing buttons on my key fob looking for my car. By the time he found it, Sophie had fallen asleep. I drove her home, expertly navigating the snow and ice-covered roads like anyone who grew up in the mountains should be able, and at long last we arrived at our home. Sophie was so excited she exclaimed, “yeah!” louder and with more enthusiasm than I had ever heard her do it before.

Rochelle had wanted me to take a picture of the view from our window in the room, but without seeing the full resolution image you might not be able to tell that we could see the capitol and the Washington memorial (among other landmarks) from the large windows. If you want to squint at the photo and try to see what we could see, check out the Cell Phone Photos album, or click on this direct link for the maximum resolution.

How the Kids Are

Micah

Micah handled it all very well, but we’re not exactly sure he fully comprehended the gravity of the situation. He did ask a few questions that indicated his concern, but he didn’t seem to be too upset by the whole ordeal, despite our explanations and descriptions of the operation.

In fact, he didn’t miss any school due to Sophie’s hospital stay. We had to have people pick him up from school Thursday and Friday, but on Monday and Tuesday school was cancelled due to snow, and their winter break began Wednesday (today).

In news specific to Micah, he is doing pretty well. Yesterday he broke down in tears when asked about a book he had left on the floor in his closet rather than returning it to its rightful place in the bookshelf downstairs. After several specific questions it turned out he was so upset because he had the intention of lying about the location of the book before I stumbled upon it during a routine check of his closet’s cleanliness. He knows there are severe consequences for lying, but he was equally upset by the possibility of consequences for intending to lie. I assured him that there were no consequences since he didn’t actually tell a lie, but that this was a good lesson on deciding ahead of time to always tell the truth.

From Cell Phone Photos

Sophie

Sophie is doing very well. She’s laughing more, talking more, walking better and still a picky eater. She’ll repeat just about any word she hears, and is learning a lot of new words. She ate snow for the first time yesterday, she likes wearing bows on heard (present packaging bows) and can say, “bow.” She loves saying, “bless you” (buss-oo) when people sneeze, “excuse me” (a-mee-mee) when people burp, and saying “eyebrow” while touching your eyebrows. Also, she loves zippers, and is obsessed with operating them, no matter where they may be located (such as one’s crotch).

My favorite: Despite all the “bad” things the doctors did to her, she will tell you, “I like doctors.”

She came home to several new items mom and grandma had picked out for her, including a table place mat featuring the face of Sponge Bob Square Pants. She loves pointing to and naming the various parts of his face, and she even put a bottle of children’s Tylenol where the nose goes saying that it was his nose.

We’re really looking forward to watching her continue to gain her balance back and get back to where she can dance, run and jump. Her brain was squished pretty bad, and as it expands the capabilities that area is responsible for may get slightly worse before getting better (two steps forward, one step back, repeat). So far, though, she has made steady progress, and she has a prescription for physical therapy to give us an opportunity to work with professional children’s therapists to help her get back to where she was before the incident.

From Cell Phone Photos

The back of her head should heal quickly, but this was not what we were expecting for her first haircut. When a nurse began to remove little patches of her hair to make bald spots to place markers on her skull for the MRI, I informed her that she was the first person to ever cut Sophie’s hair. The poor nurse nearly died. She felt so bad, but I assured her it wasn’t a problem. We are looking forward to the day when we can even out her hair with a nice haircut that won’t look so odd. Luckily, the rest of her hair is long enough to do a kind of “comb-over” to nearly hide the large bald spot. It just makes her hair look really thin there.

The final chapter in this story will be written when the pathology of the tumor comes back in the coming week. Tomorrow I can call their office to check and see if the results are in. If the tumor was benign and harmless, then we will be mostly done with the whole ordeal and we can begin to move on with our lives without worrying too much more about this issue. If not, we may have chemotherapy or some other form of radiological treatment to overcome before completely leaving this behind.

Until Later

I didn’t think to bring our regular camera to the hospital (it didn’t feel like a vacation), so all of the photos I took are in the Cell Phone Photos album. I’ll take more photos with the regular camera for Christmas though. Also, you can find at least one video of Sophie at the hospital on our YouTube channel. I uploaded two, but only one is available because of some digital errors in the second video. There is a fourth video, but it is impossibly long to upload from the phone, and it may have errors as well.

In case you’re wondering, Rochelle and I handled the whole thing rather well, considering. While it was happening, I didn’t have time to stop and think about it, but when strangers began commenting and offering their condolences, I realized that brain surgery on a little girl not even two years old isn’t something people take lightly. Rochelle and I received a lot of strength and support from so many directions, I can’t possibly thank them all. Of course, the largest source of strength for all of our family has been the Lord and His gospel. He has blessed us greatly. There are a number of amazing facts associated with what we’ve gone through that, summed up, point to only one conclusion – we were highly favored of the Lord in this matter.

The care we received at the Children’s Hospital was superb. The nurses were all wonderful people who genuinely cared for our daughter and even for our own wellbeing. On several occasions the nurses cared for my wife or me with the same tenderness as they tended to our little girl.

A representative from Tricare (our military insurance company) called today and assured us that everything would be paid for and that if we needed anything else just to be sure we went through our primary care provider for a referral. Even my military unit has offered their support in anything we needed.

Geographically we couldn’t have been in a better location without living across the street from the Children’s Hospital. This, of course, is due to when it happened. Had it happened any other time, we would have been in a less convenient location. Where we were living in California the nearest facility that could have helped Sophie was over three hours away.

I could sit here and type about the many blessings we received through all of this, but I’ll spare you the word count. Regardless of whether you helped by prayer or by driving us through the snow, putting yourself and your property in harm’s way, we thank you from the bottom of our hearts. This holiday season, this Christmas, our family is celebrating Thanksgiving. We are full of gratitude beyond what we have ever felt before both to the Lord and to our friends and family. So before I run on and on about this, I’ll just leave you with one final thank you.

Thank you.

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Filed under Celebrations, Exciting, Holidays, Milestones, Sophie PMA

Quick Update

I’m posting this from a mobile phone, so forgive the lack of photos and direct links, which I usually strive to include.

Since Wenesday, we have had a roller coaster of an adventure. Sophie had a cellular mass in her brain that created a blockage keeping cerebral fluid from properly flowing through a channel near the mass. This created a rather large cist that put lots of unwanted pressure on the part of her brain responsible for balance, coordination and gait (among other things).

Yesterday my baby had brain surgery. They drained the cist and scraped out all of the tumor that they could see. She woke up from the surgery strong and angry at the world, but also beggigng for chocolate milk and fruit snacks. They couldn’t let her eat because she had a breathing tube during the surgery that had only recently been removed, and they didn’t want her to throw it all up.

Right now Sophie is sleeping. Hopefully, in just half an hour or so she will go in for an MRI to determine if all of the tumor was removed in the surgery she had yesterday. Because they are going to put her under for the MRI she is still fasting.

I don’t want to be doing this when she wakes up mad here soon (she hasn’t had any real food for over two days). So rest assured that she is doing well, the rest of the family is getting good rest and we are grateful for the extremely favorable circumstances that have enabled us to be here at such an excellent hospital in our time of need.

As soon as things settle down after she is discharged and the holidays have passed, I will post a detailed account of all that has transpired since Wednesday.

For now, use the links on the right to navigate to our web album titled “cell phone photos” to see the latest photos I upload from the hospital. Remember, first you’ll click on the link for our family photo album, then you need to find the specific album titled “cell phone photos.”

**Edit**

I recently typed up a much more detailed description of the events outlined here. Please follow this link to read the full article with photos.

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Filed under Milestones, Sophie PMA