Category Archives: Sophie PMA

And That’s a Wrap

From Family 2011

I’ve gone more than seven months without blogging here. Gee, you’d think life has been stressful or something…

Gladly, the stress in our home has been mostly distributed among the adults. Micah and Sophie are happily unaware of the majority of our family stress, although I’m sure they feel it from time to time, especially on days when Rochelle and I are not at our best.

Regrettably (and gladly, I suppose), we are aware that a huge source of unnecessary stress in our home comes from clutter, disorder and excess physical belongings. They distract from our spiritual needs, they cloud our thinking, and they impart their chaos to our thoughts. I’ve been aware of this growing problem for many years now, but only recently has it become so acute that I began contriving a solution and countermeasures.

As long as I can remember I’ve had a fondness for simplicity, a longing for a concise collection of belongings that could be easily transported, sorted and organized. Of course I haven’t always lived that way very well. I tend to hang on to things that I may need one day. Just in case. I love to be prepared, but preparedness isn’t about excess, it’s about necessary necessities.

I remember with great fondness my mission time in Mexico and my time living in small spaces as a student at SCAD. Moving from place to place required no more than a couple of hours to pack, and most (if not all) of my belongings could be carried by me alone. I sorely miss that mobility, and now my goal is to get my entire family into a position where we know what we own, why we own it, and how each item of our belongings is essential to our goals and priorities.

This will be a slow process, and one that I hope to share with you along the way.

If you’re interested, I highly recommend a book that I read recently called “Simplify” by Joshua Becker. I believe it is for Kindle only, but it is inexpensive and can be read from any Kindle reading application, even in a Web Interface that Amazon provides.

If you do not wish to pay for the book, you should still check out Becker’s website. Most of the ideas in his book are outlined in ample detail in his many blog posts there. I should warn you that I find his tone regarding simplification to be a tad overzealous at times, often coming off as a bit preachy. Rochelle didn’t feel preached at when she read Simplify, but I did in a couple of places. So if you’re not one to be preached at, perhaps just following our adventures here with my sporadic blog posts will be sufficient.

Although, in my excitement I can’t promise I won’t preach at you either. Simplification is something that I believe we should all strive for.

That is our great endeavor this year. It isn’t a new year’s resolution, but it is a change in our home that began with the new year.

The rest of our family news will be covered in greater detail below, but suffice it to say that we’ve experienced a wonderful close to 2011, and we are all looking forward to 2012.

In the latter half of 2011:

  • Micah started at a new school.
  • Sophie saw a neuro-ophthalmologist.
  • We flew out to visit my parents in Arizona.
  • Rochelle and I got new shoes.

Books We are Reading

Brian

Hurray! I’m reading again. My main Christmas gift this year was a new Kindle Touch. Since I got my Kindle, I’ve actually read several books. Most of them have been small, free books (just to get my reading muscles warmed back up after such a long period of minimal use), but I did read The Hunger Games, book one. I enjoyed it, but I can’t say it was one of my favorites. The story was excellent, but I wasn’t able to connect with the characters, and the first person perspective paired with the present tense writing style didn’t agree with me. I think I’ll enjoy the movie, and I plan on reading the next book in the trilogy soon.

Currently, I am actually attempting to finish nine books that I’ve started in the last year. The one I started most recently on my Kindle is The Frog Princess. I’m not going to recommend this book to anyone except the most curious. It’s not horrible, but I’m only a third of the way through and I am going to have to force myself to finish it. I want to finish it, but it’s not the best writing for me.

If you really want to keep up with my reading, I log all of my progress on books I am currently reading, rate and review books I’ve read, and I even keep track of books I intend to read at a site called Goodreads. Here’s the link to my profile page there: http://www.goodreads.com/brianhaddad

Rochelle

Rochelle has always read a ton. She is currently knee deep in her twelfth read-through of the Harry Potter series. I think she’s on book 5 or somewhere thereabouts. I lose track of how many times she’s read them and which book she is on.

For Christmas she got all 8 of the Harry Potter movies on Blu-Ray. We’ve been watching them since we got back home from our little vacation, and so far we’re halfway through the sixth movie. I haven’t read the books, so I’m trying to enjoy the movies just as they are, but I can’t help but notice inconsistencies in the characters and holes in the plots – all of which Rochelle assures me is the result of the movies being inaccurate. I plan to read the Harry Potter series once the ebooks are released later this year.

Rochelle is also on Goodreads, and she too keeps track of books she liked, books she plans to read, and sometimes even books that she is currently reading (unless she is reading something that she’s read before). You can visit her profile there at: http://www.goodreads.com/rochellehaddad

How the Kids Are

Micah

From Family 2011

This year Micah started going to a new school. For his first two years here in Maryland he attended a school just outside of the military base where we live. The school was mediocre at best, often causing more problems than it solved with new policies and rules.

By the end of his second grade year there, Rochelle had nearly reached the limits of her patience dealing with the school, and to her great delight a new public charter school was granted permission to operate on  base.

Unfortunately, the new school, called Imagine Andrews, does not yet have a dedicated, official school building (they are imagining they have a school building). For this year they are stationed in a run-down, hastily remodeled maintenance building at the edge of one of the base golf courses. By next school year they hope to complete construction on an actual school building, complete with a much needed cafeteria, gymnasium, playground and additional classroom space.

The curriculum seems to be challenging Micah so far, which is good. There are several problems, since it is a new school being run by a new faculty in cramped conditions, but we are doing our best to remain positive and supportive of their efforts.

Micah, along with the rest of us, was excited to go back to Arizona to visit his Grandma and Grandpa Haddad. Amazingly, neither of our children showed any concern that Santa wouldn’t be able to find them in a different home.

Micah came home with plenty of cool gifts, including some fun games and projects, Lego sets, spy gear, and some books. He doesn’t know it yet, but his toy collection is going to be drastically reduced under our new policy of simplification, and we are going to help him ensure that his toys are limited to the most versatile, fun toys that he can find. Of course, we aren’t going to be totally oppressive with this, but it will be good for him to be discerning and thoughtful about what to keep and what to get rid of. I learned a lot as a child when my parents would make me dump my toy collection on the ground and think hard about what to keep. I’m hoping he’ll remember the activity with the same fondness that I do now.

Sophie

From Family 2011

Sophie is doing especially well. Every day she shows us new ways that she is smarter than we previously suspected, and she is developing an awesome sense of humor, along with a sharp attitude.

As mentioned above, she did have to see a neuro-ophthalmologist. It started when her last MRI in November generated some concern. We do not yet have any real reason to worry, but there appears to be some thickening in an area that her doctors are sure is merely scar tissue. It is not unheard of for scar tissue to thicken a little, even a few years after surgery. However, there is a possibility that this thickening could be a type of tumor growth.

Some of you have been lucky enough to see Sophie recently, and if you’ve seen her recently it’s likely she’s shown you her “eye trick.” She recently learned that she can roll her eyes up and point them in two different vertical directions. When she showed her doctors, they decided to send her to a specialist (the neuro-ophthalmologist) to see if the anomaly could be related to a new tumor growth.

With this new specialist, Dr. Avery, Sophie was a little angel. He was particularly impressed with her every step of the way through the appointment. He assessed her vision with one of the most in-depth eye exams I’ve ever seen, always amazed at her intelligence, cooperation and maturity. He couldn’t stop raving about how well she was doing.

Near the end of the examination he informed us that she would need eye drops to dilate her pupils. He said that it would “S-T-I-N-G a little” and that there was usually a lot of “S-C-R-E-A-M-I-N-G” with other children. Rochelle and I looked at each other, then told him that he didn’t need to spell it out with her. We explained to Sophie that Dr. Avery was going to put some drops in her eyes that would sting and hurt a little, but that it would go away fast.

I had her rest her head in my lap and helped the doctor hold her head still while he applied the drops. She barely budged, and didn’t complain even a little. Dr. Avery’s amazement was complete. He couldn’t recall precisely the last time he had seen such a cooperative, brave patient.

In the end, Dr. Avery concluded that the eye issue is a result of the original tumor and swelling that she had two years ago, though there was no visible sign that it was a direct result of the swelling (apparently you can see that sort of damage quite clearly even years later on the back of the eye). He was certain that there was no evidence that this eye problem was a sign of any new tumor growth, which came as a great relief to us all.

Sophie especially loved the trip out to Arizona, and had been talking about seeing her uncles, aunt, cousins and grandparents for several weeks beforehand.

For Christmas she also got some craft items, some books, a few toys and her favorite: a pink Nintendo DSi. She may not look terribly excited in the photo above, but she plays it nearly every day, and has a particular fondness for a certain princess game.

Sophie’s next MRI is in February (on Valentine’s day) and we will likely post an update after we get the results.

Until Later

Especially now that we have something specific to write about, and since its process will help me feel more organized about life in general, I expect to be a little better about blogging. But alas I’ve never successfully promised to be better about blogging, and I’m not going to make any promises!

I trust that you’ve learned to be satisfied with my ineptitude at blogging, and I should likewise be more forgiving with myself.

It is our deepest and greatest hope that all of you have transitioned safely and happily into 2012. We look forward to making sure we blog at least once this year, and we also look forward to your emails, Facebook posts, phone calls, text messages and old-fashioned paper mail.

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

Christmas is Coming

From Family 2010

While there may have been no excuse for my negligence in posting here during the month of September, I hope that all of you know by now that I do not post normally during November. November is National Novel Writing Month (NaNoWriMo), and I have participated for the last three years (and finished a winner every time).

Be sure to visit our Family 2010 album as the year is drawing to a close. There you will find photos from our recent date (no kids!) to an ice skating rink at the Pentagon Row in Pentagon City. Also be sure to visit our YouTube channel where you can see three videos that were uploaded since the last post.

Books We are Reading

Brian

I just finished NaNoWriMo. Give me a break. I’m still looking with guilt at my unchanging pile of books to read, and every day I feel that I inch closer to actually reading one. However, in the short term I really want to see if I can edit my NaNoWriMo novel into something bearable to read.

On a nostalgic note, I’d like to add that I’ve been enjoying playing an updated version of an old game I loved when I was younger. Nintendo recently re-released GoldenEye 007 for the Wii. It was originally one of the best Nintendo 64 games ever made, and they did a wonderful job refreshing it for the new system. If you ever played and loved GoldenEye 64, you must try it on the Wii.

Rochelle

Rochelle is currently re-reading “Reading Lolita in Tehran” for the third time. Reading has been relatively routine for her during the last several months, so she doesn’t really recall anything worth sharing. Keep watching this space for something interesting though, because I still haven’t been reading squat.

How the Kids Are

Micah

From 020

For the time being, I am giving up on trying to get Micah to write anything for this thing. Maybe it will be a summer only event. Until then, I’ll just fill you in on what he’s been up to.

He won three awards at school today. One for attendance because he thinks we’d sell him if he ever skipped school, one for being nice (while he is nice most of the time, we are a little surprised he got that one), and one for getting a 4.0 (the one in the picture, where he’s posing with his teacher, Ms. Reynolds).

He is both excited for and dreading Christmas, mostly because he really, REALLY wants a Nintendo DSi, but we’ve made it very clear to him that they are way too expensive for us to get right now, and we constantly remind him that he has a history of abusing electronics, and we wouldn’t want to let him have a DSi unless we knew he could handle it without breaking it. Plus, he manages to convince himself every year that he’s getting coal (and someday we’re going to get it for him as a prank, but when he’s older and won’t be scarred for life). Overall, he’s absolutely sure he’s not getting a DSi, but he’s still holding on to a last shred of hope that Santa will put one under the tree in spite of all we’ve said.

What he doesn’t know is that we have had a DSi for him sitting in my closet for over three months. We’re really excited about giving it to him, and we REALLY hope he doesn’t break it. We also got him a certain Pokemon game that he wants. I’m going to try to get good video of him getting this gift, because we’re sure he’s going to freak out. We are hoping for a reaction like this kid (YouTube Video), but it’s probably going to be more like this kid (YouTube Video).

I was going to just let you be excited with him, but in this case I decided to take you on our journey as the parents who are waiting as patiently as we can to give our child a gift he really, really wants.

Sophie

From Family 2010

No news for Sophie. She’s still just being cute. She now finds interesting words to append, “ies” to the end of (“pearsies for pears, “friendsies,” and many more). She has become quite a funny little girl. She even gets a lot more jokes now, and her little, “I get it” laugh is super cute.

Sophie has learned how to button buttons, and she helped extensively with the tree decorating (which happened almost two weeks late this year).

A long while back, when Sophie was learning not to be afraid of water, we used to have her lie down in the tub with a little water and we’d move her around “like a mermaid” (in her own words). I took a video with my phone, and finally posted it to YouTube. Yeah, it’s got a naked girl in it, but it doesn’t show anything she’d be too embarrassed about later in life, I hope.

She has had a strong interest in letters recently, learning to spell her name and recognize most of the letters in her name. Of course, when she spells her name, she goes through the, “S – O – P – H – I,” then she gets distracted by the “H, I” and continues with, “J, K, L…” She recognizes the “S” the “O” and the “P” most of the time, though sometimes “corrects” herself and says that the “O” is a circle (which it is, but not when that circle is being a letter).

For Sophie’s gifts, you get to be with her on her journey. I’m not telling what we got her, but it’s going to be good.

Oh, and in November we took Sophie in for yet another MRI. Things are looking great in that little girl’s head. No new tumor growth, and her brain is finally starting to look more like a normal one (some of the cavities that expanded when the fluid built up and where the tumor was may never go completely away, but they are minor and hardly noticeable now). Also, the one year anniversary of her surgery is this Saturday (the surgery was on a Friday last year). We are full of gratitude this year for all that happened last year and we are looking forward to spending the holidays with that beautiful little girl again.

As for what lies ahead, we still don’t know. We’re waiting to get an appointment with the man who can help determine what to do from here. We’ll let you know as soon as we know anything.

Until Later

Well, that’s it for this month. Shortly after Christmas I’ll make an effort to get all of the videos and photos we take posted. Thanks in advance to all of you who may or may not have sent or are sending gifts, money or love. We appreciate all that you do as our cherished and beloved family, friends and blog readers.

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Filed under Exciting, Holidays, Milestones, Sophie PMA

Five Days Late

From Cell Photos 2010

Wow, where did the last week go? On the 13th I remember thinking, “I’m going to write up that post for the family site,” and it didn’t happen. Then one thing led to another thing and here I am posting five days later than I ever wanted to. While not an official rule, I always hope to have something posted for you by the 15th of every month. So, here is an underwhelming and unforgivably late collection of goings on from the Haddad family.

Yes, we’ve engaged in various activities of varying levels of excitement, but we have, on every single occasion, neglected to bring out the camera and record anything for you to see. I know, we’ve failed you, and I also know you don’t really care. It seems you can’t make up your mind. I understand your frustration, even if it is only the frustration that I feel, superimposed unwittingly upon you in the wildly distorted version of the world that lives safely confined to my head.

For any of you who are still wondering, I am no longer working the night shift. This is a good thing. As of a few weeks ago, I am working days again. There has been much rejoicing. Micah’s final day of school was last Wednesday, Sophie’s 6 month MRI was a couple of weeks before Micah’s last day of school, and the local pool is open so Rochelle and the kids have been visiting it with much frequency. So, with more details on all of that, let’s get into the individual sections.

Books We are Reading

Brian

I haven’t read any books in so long, it’s starting to eat at me. How can I call myself an intelligent person if I can’t even make time to read? I’ll get there, I promise myself. I was doing so well for a while, then everything fell apart. When I finally pick a book back up with the intention of finishing it, I’ll let you know.

Rochelle

She recently reread Anne of Green Gables, Anne of Avonlea, and Anne of the Island, which she just finished today. I remember we purchased the entire set of Anne books a while back, and, though I haven’t been counting, I’m pretty sure she’s read every book in the series at least fifty times since we bought the set two years ago. She really loves those books.

Tonight, before going to sleep, she will have to read, which means she’ll be picking out a new book. This usually involves several long moments of agony, in which she wishes she could simultaneously read several books that she wants to read equally, all while longing that her book collection were vastly larger. She’ll stand for what feels like hours in front of the bookshelf, staring at its contents, and if she can’t find anything there she’ll turn on her Nook and browse through the many books she’s downloaded onto the device, or peruse through the online selection, carefully pondering what she might purchase with her monthly book budget. In the end, if she isn’t feeling terribly adventurous, she’ll make her choice from among a very narrow set of books that she loves because she’s read them a hundred times or more.

Never mind, she’s not done with the Anne series. She’s on Anne of Windy Poplars. She’s reading it right now, as I type.

How the Kids Are

Micah

I haven’t taken any photos of Micah recently, and I would go in and take one of him sleeping right now if it weren’t for two potential problems. First, he’s been staying up incredibly late these days. So, I don’t want to barge in there with my flash blazing if he is still awake or just falling asleep. Secondly, he has been very hot in his room, so he hasn’t been covering himself very modestly. Sure, he’s got underwear on, but you don’t need to see it. And if he’s asleep, and I take a photo of him, you’ll probably wind up seeing some tighty whities. I’ll get photos of him up for next month. Promise.

Now, his self written content. For next month, I’m going to try to get him to write a little bit more. Also, I didn’t get a chance to go over this with him before writing up this post, so I’m just leaving all the errors in there (though I’m changing the letters that look like other letters to reflect the intended letters).

Almost everyday my family goes to the pool. We just went to the shallow part and of coarse, we went to the deep end. (1) Then at school, we had a picnic. And we had the last day of school with a pizza party. And we had feild day. (2) Have a great sumer folks!

  1. Just to shine a little light on why this is significant to him – he’s developed a borderline phobia of deep water. I remember him carelessly splashing around in deep water with those floaty things on just a couple of years ago, but something happened since then. Now, when we take him into deeper water, he literally freaks out – getting very tense, clinging on to anything he can as though letting go will mean instant death, and he becomes incapable of reasoning. This is often accompanied by sobbing and screaming bloody murder. Last time we went to the pool together, just yesterday, I worked with him for over an hour (at my own expense, since I was the only one not wearing sunscreen) and got him to calm down enough to be able to reason with him a bit. Though he remained very nervous, I managed to get him out to the deep end without him clinging violently to me, and once he stopped screaming hysterically, he even called out to his mother to show her how brave he was being. However, I had to keep at least one hand firmly gripping him at all times, preferably two. Every time I changed my hand configuration I explained very clearly what I was going to do in a calm, loving voice, I went over how I was going to do it several times, and I made sure he was ok with it. Then, when I actually executed the change, he lost it and it took many minutes to get him to stop screaming. Hopefully, if I can work with him with any regularity, we can prevent him from developing a real phobia that carries over to adulthood. I certainly identify with his feelings though, because, as many of you know, I am currently dealing with a phobia of needles that I developed as a child.
  2. The picnic, pizza party and field day didn’t happen in that order. I didn’t get all the details on the field day, but I think it was just a big outdoor sporting extravaganza at the school. It wasn’t a field trip (which, to me, would have been much more exciting). Now that I think about it, I think they had their field day, then the picnic, then the pizza party. Not that it matters, of course.

Like I said, I want Micah to write a little more for next month, so if you have any inspiring questions for him to write about, ask away in the comments. He may complain about having to write more, but he loves the attention, and he doesn’t have any school work to worry about, so it’s no big deal, right?

Sophie

From Cell Photos 2010

First off, Sophie had her six month MRI on Wednesday, the second day of June. She went down fine for the scan, but woke up afterward a little early due to a coughing fit. She had been somewhat congested, which was a concern with putting her under for the scan, but the doctors decided it was safe. She was safe, but the mucous had collected a bit in her throat, causing her body to want to eject it, inducing a coughing fit. She was still very groggy, and we had to endure a very cranky little girl for over an hour before she was able to show the nurses that she could keep fluids down and they let us go home.

The following Friday, I called to see what her scans looked like. They looked great. Thank goodness.

Other than that, she’s been very healthy and very happy. She enjoys going to the pool, and she has become a lot more vocal and expressive over the last month or so. Most recently, she has decided that she doesn’t want to go to bed on time. This is fine with us, as long as she plays quietly in her room. We put the gate up, sealing her inside, and for the first few days she would stand at the gate and cry for a few minutes until deciding that we weren’t coming. At that point, she would go play with toys. She would often take one particular toy that makes music into her bed with her and fall asleep listening to it. She’s very sweet.

The last couple of nights have been different though, with her deciding that she’d rather scream and cry than play and get in bed. Tonight I stood outside her door for several minutes listening to her cry like a mad woman before she started pitifully calling out, “Guys, come here right now. I’m crying. Pweeeeeeese.” Her voice was sobbing and whiny. It was really cute to me. Eventually, these calls turned into, “I need help. Please, I need help!” It’s quite entertaining. With it being Father’s Day and all, I decided to go in and comfort her for a minute. I held her, walked around her room for a minute, then sat by her bed until she fell asleep (which didn’t take long at all because she was really tired). That’s when I snapped the photo above. She always goes to sleep with her bear, her cat, and her Elmo doll. She is a very sweet little girl.

The other day we got some Summer entertainment equipment. The adults got roller blades and the kids got skates. We all have or purchased helmets too. Sophie’s skates are the type that snap on over the shoes. She loves looking at them and wearing them (they have Tinkerbell all over them), but not skating in them. She enjoys watching us skate, but she gets very nervous when we put her down on the ground with them on. I figure she’ll feel more confident after watching us get better at it for a while. I remember being very good at roller blading at one time, but now every time I strap them on I feel like I’m going to fall on my rump the whole time. It’s frightening.

Oh yeah, the only new video I’ve posted recently is of Sophie making silly faces. It’s fun, but it was taken on Rochelle’s old camera phone, so the quality isn’t great. Next time we go skating I’ll have to take some photos and video. And I’ll try to capture us doing other interesting things as well. No promises though, we’re still very busy with other life stuff.

Until Later

I know you don’t mind the post being late, but I am striving to post regularly enough that you can always come around the middle of the month and see the latest news. This month, I apologize for posting late, and I will do better next month.

Rochelle is taking the kids to see her family in Mississippi this next week, so we should have news and pictures from that trip to post next month. I would love to join them on the trip, but there is no way I can take any time off work right now. Plus, even if I could get away, it’s better for me to save the time off for later in the year when the holidays start coming.

We love all of you, and want to wish every father in our family a happy Father’s Day today (even though most of you are probably reading this after Father’s Day).

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Filed under Normal Life, Sophie PMA, Unexciting

Off Balance

From Cell Photos 2010

I will do my best to keep the tone of this post from getting negative.

I will do my best to keep the tone of this post from getting negative.

I will do my…

You get the point.  This post is titled “Off Balance” because that’s the way we all feel around here. I’ve been on a night shift working from seven pm to seven am. It’s the same nice Panama schedule from before (two days on, two days off, three on, two off, two on, three off, etc. – I only work 50% of the days in a two week period). The only problem is, even on my “days” off, I still have to keep the same night-life schedule. I do not like the night-life, and it is not family friendly. I’m beginning to feel like a guest in my own home. This night shift won’t last forever, and when it’s over we’ll all feel better.

On a lighter note, let’s dive into some Haddad family news!

Some of you may remember that Rochelle got a Fitbit for her birthday last month. She has really been enjoying it, and it does a good job helping her track how much physical activity she gets and how well she’s sleeping. Her only complaint is that it isn’t an implant – there have been times that she’s gone out and done a lot of walking (like when she went with a friend and Sophie to an Air Show) but left the Fitbit at home. While she can go in to the online application and manually log the activity (guessing as best she can at how much and how intense the activity was), the Fitbit’s automatic tracking of your movements is much more reliable and easier.

So, she really likes all of the information that it makes available to her automatically. Apart from occasionally forgetting to put it on, she hasn’t had too many problems with it falling off. She hasn’t done any serious jogging outdoors with it on, so that sort of activity might be more likely to cause it to fall off. Knowing how much she detests jogging, I doubt we’ll ever know.

Hum… There really isn’t much else to report in the general notes, so let’s get into those sections.

Books We are Reading

Brian

I have made laughable progress in the Philosophy book that I am “reading.” Most of my reading time has been poured into catching up with my growing stack of magazines. The rest of my time has been spent on less productive entertainment endeavors. Basically, after midnight, I lose all motivation to do anything productive. I really want to sleep. No matter how much sleep I get during the day, it just feels wrong to be awake all night. Reading can often make me want to sleep even more. So, I just haven’t gotten much reading done.

Rochelle

Rochelle recently enjoyed Hunger Games and Water for Elephants (she warns it had some adult themes). She is currently reading Morning Glory. It is also after seven in the morning and I want to post this before I go to sleep. So if you want details or her opinions on any of those books, post your questions in the comments and we’ll get back to you.

How the Kids Are

Micah

Stock Photo (not recent) From Cell Phone Photos

Yesterday (1) I went to my friends (2) house to have a brownie sundae. I watched Matthew and Clay’s brother play a video game. Then Austin said it was time to eat a brownie sundae. Then everyone jumped up and eat (2). Then we left. (3)

  1. Yesterday, meaning Friday evening. Thus this was written on Saturday, for those of you who can’t do day math. 😉
  2. As you can see, I didn’t bother editing this. I will go over the mistakes with Micah later, probably when I wake up Sunday evening.
  3. Micah’s update is short this month for several reasons, most related to the basic fact that life is out of balance for us at the moment. He will likely be writing more about the past month, and you can look for that to be posted sometime between monthly posts, if not along with next month’s post.

Sophie

From Cell Photos 2010

Sophie is probably the most exciting of all of us. Most recently, she is being weened from her pacifier. Rochelle and I had both expressed a desire last year to take the pacifier away when she turned two, but just a couple months prior to her second birthday she had brain surgery, and her comforting pacifier became more important than ever. We didn’t want to rip it away in her time of need, so we held off.

Shortly after her surgery, though, we did begin restricting the pacifier’s use to nights and nap-time only. This worked well, and she quickly ceased asking for it during the day. So, with my three-day weekend falling on this weekend, and since my night-time schedule requires me to be awake all night anyhow, we decided this would be a good weekend to take away the pacifier for good.

Friday morning when I got home from working the previous night, we took Sophie and her pacifier to the kitchen trashcan. We explained what was going to happen and why, then we had her help us cut the pacifier to render it unusable (she called it “yucky” afterward). After she inspected the two pieces, we had her throw them away in the trash. Then we took the whole trash bag out of the can and she helped me walk it out to the dumpster. We had her say her final goodbyes, and that was the end.

I went to bed, and Rochelle kept the kids busy enough that Sophie didn’t even get a nap in (so she didn’t get to see how well she would nap without it). Due to her excessive exhaustion, Sophie slept through the night without a hitch. When we first tucked her into bed she did ask for the pacifier, but we reminded her that it was gone. She recited, “yucky,” and, “trash.” Then she turned onto her side and went to sleep.

Rochelle and I were shocked and amazed. Maybe we didn’t need to have waited for me to have a three-day weekend at home after all.

Then, Saturday night came. Nap time came late enough in the day that she fell asleep on her own, never even asking for the pacifier. At night when we tucked her in, she asked for it again. Once more I said it was all gone. She said, “go get it.” I said, “it’s in the trash, remember?” She said, “yucky.” I said, “that’s right. You’re a big girl now and you don’t need it so we threw it away.”

She went to bed right away after that. Another amazing night? No. Around midnight she began screaming and crying. Our air conditioner runs so loud that I didn’t hear Sophie until the screaming got really intense. By that time Rochelle was already out of bed trying to comfort the little girl. I relieved her of duty and tried to calm the hysterical princess myself.

“What do you want?” I asked.

“Pacifier.”

“It’s gone, remember?”

Her screaming intensified. I decided to avoid that subject, but she continually brought it up.

Eventually, I got her to lie down on my chest (like she did when she was a little baby). She protested loudly at first, but eventually calmed down and got comfortable. We talked about what she might want to do the next day. Coloring on the sidewalk with chalk is fun. Singing songs can be fun. What songs would you want to sing? ABC song. Popcorn song. Twinkle Little Star song. Our conversation went on for a little longer. I also deliberately avoided talking about anything on the television, because somehow she is smart enough to know that I’m awake anyway, and if I deemed it necessary, I could take her down to watch a show until she fell asleep. I didn’t want to set that precedent though since it would not be an option for Rochelle when I am at work. Eventually Sophie said, “I’m sleepy. Sleep in bed?” After tucking her back in she quietly asked, “Pacifier?”

I ignored the inquiry, asking her instead about her plans for the morning again. We talked a little more. Eventually she told me “good night.” She asked for several kisses, gave me some kisses on my scruffy cheeks, and I left quietly. Our stairs creak horribly. You can’t sneak up or down them unless you’re floating. I did my best.

An hour later she cried out. I called softly up the stairs, “Go to sleep, Sophie.” She did, I guess. It’s now just after one in the morning. No longer am I amazed. This is what I expected the first night, and after that impossibly perfect night, I began to suspect that the second night might be the hardest. I was right. I’m also beginning to wonder if skipping the nap for a while might make night time sleep easier on everyone. I’ll bring that up with Rochelle in the morning. I’m hoping that Sunday night will go better, because Monday night I work. I hope we haven’t opened a can of worms with this. If Monday night is still hard, Rochelle will be on her own until Wednesday night.

In other Sophie news, we finally got some great video of her singing. It’s almost three minutes of super-cuteness.

Also, and I’ll try to get video of it for next month, Sophie is starting to whistle fairly well.

Within the next couple of months we will be taking her in for her six month post-operative MRI. We are somewhat nervous about this one. Not because of anything we’ve observed in Sophie, but because most of the surgery related inflammation should be largely gone, and if they see anything unusual it will be a tumor. We are confident that she has been healthy and normal, so we are 70% confident that she will be clean. There is so much that we do not know though, and we are constantly praying for the best. We also are aware of and grateful for all of your prayers.

Until Later

I just haven’t had a lot of time to make notes of what is going on, so most of this is straight from memory and I’m afraid I’ve left out some good stuff that has escaped me.

As always, we appreciate your readership and love.

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Filed under Milestones, Normal Life, Sophie PMA

New Biopsy Information

We met with Dr. Packer today. Without going into too many of the grueling details, let’s just say our appointment was riddled with hard evidence for Murphy’s Law. It started with us needing gas and finding the closest gas station completely shut down, and it only got worse from there.

After stumbling through the obstacles and afflictions, we finally got to see Dr. Murphy, I mean Dr. Packer (I actually typed “Dr. Murphy” the first time, almost deleted it, then decided to keep it that way). He was a really nice guy, and Sophie liked him a lot. At first he examined her. He said she looks great. Then he pulled up her recent brain scans and showed them to us. He also relayed the official radiologist’s reading of those scans – all clear.

In looking to get more information about PMA, the type of tumor that we were told was removed from Sophie’s head, I asked a few questions. His response to my questions was simple and it was unexpected.

Sophie didn’t have a pilomyxoid astrocytoma removed. We had been misinformed. Dr. Packer pulled up a document that resembled a long email exchange. It was the pathology on Sophie’s tumor. In it were notes, comments and explanations bouncing back and forth between the Children’s Hospital biopsy lab and Dr. Burger (the man who, with his team, named PMA as a new type of tumor over a decade ago). Last we were told in January, Dr. Burger believed Sophie’s tumor was a pilomyxoid astrocytoma. Dr. Packer told us that Dr. Burger had not been happy with the result, and had gone back to have another look at her slides.

It turns out Dr. Burger couldn’t place Sophie’s tumor squarely into any category. He ended up making something up.

Now, before you cry foul, remember that pathology is more of an art than a science. To categorize a tumor cell, you have to look at it under a microscope and decide how mutated it is compared to the healthy cells it originated from, then rate the level of mutation on a scale of one to four. This is a highly subjective and imprecise process – an art form. If anyone is going to make up a category to put a tumor in for my daughter, I think Dr. Burger is a good candidate. I’m not one to say who the best is in his field, but Dr. Burger has literally written the book on the subject, and I’m feeling rather inclined to believe him in these matters (Dr. Packer appeared to have the same level of confidence in the new pathology from Dr. Burger).

Essentially, Dr. Burger is now saying that Sophie’s tumor (if I recall his words correctly) was a grade two pilocytic astrocytoma (PA). The explanation was that the tumor appears to be a typical PA (the low grade form of which is the most common pediatric brain tumor and is generally harmless once removed) with slightly more aggressive mutations, which is why he is calling it a grade two PA. This is also why we will still be getting MRIs every three months this year rather than every six months (as would be the case in a normal PA patient).

Of course, I may not have understood exactly, but that is what I took away from the meeting.

As time goes on and each time we meet with the doctors, we will continue to learn more. For now, I’m relieved that her tumor was (probably) not PMA. PMA sounds a little frightening as there is evidence it may have a higher mortality rate than other astrocytomas.

I should also note that the Children’s Hospital biopsy lab was thinking her tumor may have been some kind of glioma (I think, but I can’t remember), but they were so uncertain that they deferred to Dr. Burger – the expert.

On a personal note, judging from his photo, I think I would like to meet Dr. Burger. He seems like a very interesting man.

Finally, I asked about the research opportunities that were taking place where Sophie’s tumor cells may be of use. Dr. Packer told us that, just recently, an agreement was made between several large hospitals regarding pediatric brain tumor studies. In the agreement, the Children’s Hospital became a major supplier of samples, and another hospital (I can’t remember which one for sure, may have been Johns Hopkins) will be conducting in-depth genetic and other analysis of the cells. In fact, if Sophie has a recurrence, they will immediately perform a detailed genetic analysis of her tumor cells and, in Dr. Packer’s words, “they will find [Sophie’s] cute gene in there somewhere.” For now, we were assured that her samples are already part of the studies.

Sophie liked Dr. Packer so much that by the time we made it to the car to leave, she was chanting, “Doctor … PACKER!” Eventually she said it so smoothly, it sounded the same as if you or I said, “Dr. Packer.” It’s really cute to hear her say it. If you ever call, be sure to get her on the phone to say, “Dr. Packer” for you.

As always, watch this space for updates when they come.

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Filed under Sophie PMA, Supplemental

New Feature

Well, in the technology world this wouldn’t qualify as a “new feature,” but for this blog it’s a significant bit of information.

I’ve begun categorizing posts separately that contain significant information or updates related to Sophie and her Pilomyxoid Astrocytoma (pediatric brain tumor). If you have come looking for information related to her journey, please use this link to view only those posts:

https://brhaddad.wordpress.com/category/sophie-pma/

I’ll add a link to the side bar for quick reference.

Keep in mind: When using this category link, only the summaries of the entries will be shown. To read the full entry you will need to click on the title!

Thank you all for the immense love and interest you’ve shown through our rough times.

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Filed under Site Changes, Sophie PMA, Supplemental

Craziness

From Family 2010

Wow. It feels like so much has happened in the last month, but when I try to think about the details, there really isn’t much to tell.

For me, one of the most exciting events of the month took place today. After owning our 2003 Ford Taurus for about a year now, I finally got around to figuring out how to set the door keypad code. I always thought it would be horrible to have that keypad by the door handle laughing at us in the event that we locked the keys in the car – taunting us with the promise of being able to unlock the car if we had only received the code from the dealer.

Since we didn’t get any papers from the dealer with the code or instructions on how to reset the code (no manual was found anywhere in the car), I had to scour the Internet and the underside of the dashboard for information. Eventually I found the factory code, and fifteen minutes later (after several failed attempts) found the correct instructions for setting your own code. Now we have a code so that keypad can be useful if we ever lock the keys in there. No more locksmiths for our vehicle. Of course, we’re not going to lock the keys in the car, so I like to think of these as precautionary measures.

Let’s see… There’s got to be more to tell.

Ah, yes. Rochelle and I attended our first concert together on Friday night (the 12th). After discovering the wonderful world of Jonathan Coulton several months ago, I began following his blog and discovered that he was going to do a live show in Alexandria, Virginia (about half an hour away from us). So, we bought the tickets immediately.

We had so much fun. Even his opening band (Paul and Storm), the wild card of the evening since I couldn’t find any solid info on them, was a bunch of fun. They are, to me anyhow, primarily a comedy duo with some pretty respectable musical ability. Jonathan Coulton is the other way around – a gifted musician who has some comedic ability. Overall, the evening was full of great music, healthy comedy (definitely rated PG-13 though) and decent food (the show was at the Birchmere).

Well, I’ll pause to think for a minute while you read about Micah and Sophie. Then, if I think of anything else, I’ll add it in the farewell section.

How the Kids Are

Micah

From now on I’m going to try to get Micah to write his own updates. I’ll try to prompt him to include things you’ll be interested in, and if you leave questions in the comments, I’ll have him answer them next month.

Without any questions or prompting from me, here’s what he wrote this month (if you only read the bold text, that’s exactly what he wrote). After he finished writing it out on paper, we edited it together for his benefit. I’m including my edits here and making them apparent through the use of strikeouts, [brackets] and numbered comments/footnotes in parenthesis and italicised (1).Obviously, if he misses something of significance, I’ll include it in italics as an intro to his writing. Also, I’m hoping that, with time, his entries will get longer, because this month his contribution is meager, cryptic and… “fun.”

  1. Footnotes look like this.
From Family 2010

A few weeks before this week, I’ve been haveing fun watch[ing] my dad play Endless Ocean Blue World. Also I liked playing Wii Sport[s] Resort. The sport I liked was Swordplay.

School was fun. I got to play with the hundred block. I got to push the cart (1). You should read the books at my school. We went to [on] a field trip. We watched a screen (2) about The Star Who Could. It was fun.

There was a[n] MSA (3) at school. We sang to a 3rd grade and a 5th grade class. It was fun too. (4)

  1. The cart he’s referring to here is the lunch cart carrying all of the lunches that the students bring from home. The students all rotate through this position of “lunch cart pusher” and it was his turn recently.
  2. He meant video – he decided on “screen” after pondering for several minutes about what to call it.
  3. He wasn’t sure what the MSA was since only the older kids participated, but when I guessed “Maryland State Assessment” he recognized it as the correct meaning of MSA, though he still didn’t know that there was any testing going on.
  4. Notice how he failed to mention anything about getting in trouble in school TWICE in the last week? He had been doing quite well for a while, and then, last week, something inside him snapped. We’re working with him, and he didn’t do anything too terrible, but it was an unwanted surprise after so many days of doing so well.

Sophie

From Family 2010

Not much to report on Sophie. She can tell you everything I can’t if you just check out this video of her reading, and the new pictures I added to our Family Album (new photos can always be found at the end of that album).

If you recall, Sophie will be having MRI scans every three months this year, and she had her first one since the surgery last Monday. Within a few hours of the MRI, we were lucky to have our surgeon call us. He had seen the scans, and even though the radiologist hadn’t issued the “final reading,” they had spoken on the phone and they agreed her images look great. Everything appears almost back to normal. There is a bit of inflammation around the area of the surgery (not scar tissue, just the brain’s reaction to being poked around in), but it was much worse right after the surgery than it is now, and Dr. Magge believes it will be almost gone by the six month scan.

There were no other abnormalities present in the scan. All of the cavities, drainage pathways and everything else were in the right place, they were the right size, and there were no signs of new tumor growth. We were relieved.

Of course, that’s just one small leg of the journey ahead.

In other Sophie news, a couple of weeks ago Sophie had a “big girl day.” She went a whole day without soiling a single diaper. She had several instances of urinary tract activity, and even had a rectal egression. She did well, but the next day and ever since, she’s returned to her casual, indifferent relationship with the toilet.

Until Later

I remembered a couple more things to share before I let you go.

Micah and I did some work on our table last weekend. The table had two sliding ends to accommodate extension leafs, but we didn’t get the extenders with the table when we bought it used. This left a part on each end of the table for Sophie and Micah to pull on and play with, and one side never quite went in all the way, leaving a crack for food and spills to fall into.

So, I got some bolts and had Micah help me secure the sliding parts underneath the table. He had a good time, and learned a little in the process. That day ended up being one of the best he and I have had together this year (so far). To round it off that evening, we played a few minutes of a new Nerf game we got for the Wii.

As he mentioned in his section, Micah has enjoyed watching me play a game I got to help manage my stress levels. When I get home from work, sometimes I can be a little edgy with people, and I don’t like it. So, after doing some research and finding that this game has some therapeutic value, I bought the newest Endless Ocean game.

Oh, and Luke? If you don’t have it, you should get it! (You can train and dive with dolphin friends/partners! I named my first one Gandolphin.) When or if you have it, we can dive together over the Internet and use Wii Speak to chat while we dive. I think it would be fun to try sometime, so give me a call when you’re ready. Seriously, at $30, this game is too cheap not to get.

Anyhow, even Rochelle has noted that the game seems to have helped my edginess a little, and I have been feeling better.

If you have any questions that you would like to see Micah answer next month, please leave your questions in the comments.

Thanks for reading. Remember that we all love you, and we are grateful to call you a friend or family member (circle the appropriate response on your screen, but please don’t use a permanent marker if you’re borrowing my computer).

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Filed under Normal Life, Sophie PMA