tag:blogger.com,1999:blog-63676248071935897452024-02-20T00:07:21.200-08:00Joonbug and PossumMrs. Thomashttp://www.blogger.com/profile/12006863307067647599noreply@blogger.comBlogger45125tag:blogger.com,1999:blog-6367624807193589745.post-4128942818083173242011-08-19T22:29:00.001-07:002011-08-19T22:29:35.364-07:00Days Seven through Nine.We took a break for a few days, and then came back to the book and started again. The day before yesterday was day 7.
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<br />Day 7: Love believes the best.
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<br />This chapter talks about how we all have positive and negative attributes. In the beginning, we spend a lot of time thinking about our partner's positives, but over time, we think less and less about the positives and tend to dwell on the negatives. "Everyone fails and has areas that need growth. Everyone has unresolved issues, hurts, and personal baggage. Thus us a sad aspect of being human. We have all sinned. But we have this unfortunate tendency to downplay our own negative attributes while putting our partner's failures under a magnifying glass."
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<br />The dare says to get two sheets of paper. On one, write a few positive things about your spouse. On the other, write negative things. Place both sheets in a safe place for another day. Pick a positive attribute and thank your spouse for having it.
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<br />The journal asks "Which list was easier to make? What did this reveal about your thoughts? What attribute did you thank your spouse for having?"
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<br />I think the positive list was easier to make. I thanked Andrew for being willing to do so much for our relationship.
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<br />Day 8: Love is Not Jealous
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<br />This was actually about envy, not jealousy. It says not to be mad if your spouse is better than you at something, or more popular or whatever. You're supposed to be your spouse's biggest fan and supervisor. You should celebrate their successes rather than being resentful.
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<br />The dare says to become your spouse's biggest fan and reject any feelings of jealousy. To focus on their achievements, take yesterday's list of negatives and destroy it. Then tell your spouse how glad you are about one of their recent successes.
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<br />The journal asks how hard was is to destroy the list. It was super easy for me. I made my list on my computer rather than paper, so I just had to highlight and hit the backspace key.
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<br />Day 9: Love makes good impressions
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<br />It says it's important to enthusiastically and lovingly greet your spouse in the morning, when they get home, on the phone, etc.
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<br />This is something we already do, and so we didn't have to do anything different today. Mrs. Thomashttp://www.blogger.com/profile/12006863307067647599noreply@blogger.com0tag:blogger.com,1999:blog-6367624807193589745.post-43989484465713939152011-08-13T22:44:00.001-07:002011-08-13T22:44:16.714-07:00Day SixDay 6: Love is not Irritable
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<br />Today is about not getting mad. "A loving husband will remain calm and patient, showing mercy and restraining his temper. Rage and violence are out of the question. A loving wife is not overly sensitive or cranky but exercises emotional self control. She chooses to be a flower among the thorns and respond pleasantly during prickly situations."
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<br />It says stress can come from two things: stress and selfishness. And selfishness can include lust, bitterness, greed, and pride.
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<br />The dare says "Choose today to react to tough circumstances in your marriage in loving ways instead of with irritation. Begin by making a list below of areas where you need to add margin to your schedule. Then list any wrong motivations that you need to release from your life."
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<br />Where do I need to add margin to my life? I don't know... I guess I mostly just need more help with the kids. Waking up during the night causes a lot of stress. As for wrong motivations, I know I have a lot of bitterness and pride.Mrs. Thomashttp://www.blogger.com/profile/12006863307067647599noreply@blogger.com0tag:blogger.com,1999:blog-6367624807193589745.post-57020759679336444182011-08-13T09:40:00.001-07:002011-08-13T09:40:38.091-07:00Day FiveDay 5: Love is not Rude
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<br />This chapter was about having good manners and not being rude. "When a man is driven by love, he intentionally behaves in a way that's more pleasant for his wife to be a round. If she desires to love him, she purposefully avoids things that frustrate him or cause him discomfort." It then encourages us to work on bad habits that are annoying to our spouses.
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<br />The dare says "Ask your spouse to tell you three things that cause him or her to be uncomfortable or irritated with you. You must do so without attacking thme or justifying your behavior"
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<br />So I asked Andrew, and he couldn't come up with three things. The only thing he said that bothers him is that sometimes I chew with my mouth open. This is something that I know is a problem, and now I'm definitely going to be making sure I don't do it anymore. There are a few other bad habits that I know I have, but Andrew didn't mention them. I don't know if they bother him, but I will be working on them anyway.Mrs. Thomashttp://www.blogger.com/profile/12006863307067647599noreply@blogger.com0tag:blogger.com,1999:blog-6367624807193589745.post-35103043943241372902011-08-11T22:53:00.001-07:002011-08-11T22:53:59.346-07:00Day FourDay 4: Love is Thoughtful
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<br />It talks about when a relationship is new, your constantly thinking about the other person, but over time that changes. "Sparks of romance slowly burn into grey embers, and the motivation for thoughtfulness cools. You drift into focusing on your job, your friends, your problems, your personal desires, yourself. After a while, you unintentionally begin to ignore the needs of your mate."
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<br />There's a paragraph that says men often focus on one thing to the exclusion of everything else, while women are more aware of everything. Then there are several paragraphs about how men and women might communicate very differently, and how this can cause conflict. It says thoughtfulness is required in order to be able to meet in the middle.
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<br />Today's dare is to contact your spouse sometime during the day and ask how he or she is doing and if there is anything you can do for them.
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<br />This was another challenge that wasn't really a challenge for us. Firstly, we were together all day, so it's not like we would have the need to call each other or anything. And we're always checking in with each other, when it's not our challenge of the day. So we really just needed to continue with how we do things, and didn't have to make any special effort to complete the challenge. However, I can see how this would be a good thing to incorporate when Andrew is working. Mrs. Thomashttp://www.blogger.com/profile/12006863307067647599noreply@blogger.com0tag:blogger.com,1999:blog-6367624807193589745.post-82950861674349877222011-08-10T22:12:00.001-07:002011-08-10T22:12:56.083-07:00Day ThreeDay 3: Love is Not Selfish
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<br />This day is about putting your spouse's needs ahead of your own.
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<br />"Love is never satisfied except in the welfare of others. You can't be acting out of real love and selfishness at the same time. Choosing to love your mate will cause you to say no to what you want so you can say "yes" to what they need. That's putting the happiness of your partner above your own. It doesn't mean you can never experience happiness, but you don't negate the happiness of your spouse so you can enjoy it yourself."
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<br />Today's dare says to buy your spouse something that tells them you were thinking of them.
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<br />The journal asks "What did you choose to give your spouse? What happened when you gave it?"
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<br />I bought Andrew a pair of fancy little steaks wrapped in bacon. He always wants to get nice steaks, but we never get them because they're too expensive. So I went ahead and got them for him. He was pretty pleased when I gave it to him. Mrs. Thomashttp://www.blogger.com/profile/12006863307067647599noreply@blogger.com0tag:blogger.com,1999:blog-6367624807193589745.post-37062971154397285092011-08-09T23:18:00.001-07:002011-08-09T23:18:53.807-07:00Day TwoDay two was as easy as day one. We're both pretty kind most of the time, so it really was just a matter of paying attention to what we're doing, and trying to think of things to be even more kind. Today's challenge asked us to do at least one act of unexpected kindness, and we both did plenty.
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<br />I'm supposed to list specifics, but I am having trouble thinking of everything because it's so late and I'm way tired. It was hot and the fan stopped working, so I grabbed a stack of paper and fanned him. I cleaned out the litter boxes, which is a job he always does although he dislikes it. Andrew folded a tin of laundry for me. He took the initiative in doing the dishes. We did lots of other things.
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<br />We haven't really changed much so far, but I'm sure future challenges will be more challenging. Something I've noticed is that I feel more love already just because we started this dare.
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<br />Tomorrow is <b>Day Three: Love is Not Selfish.</b>Mrs. Thomashttp://www.blogger.com/profile/12006863307067647599noreply@blogger.com0tag:blogger.com,1999:blog-6367624807193589745.post-40996932396565950722011-08-08T22:32:00.001-07:002011-08-08T22:32:52.342-07:00Day OneI have completed Day One of the love dare. Day one was "Love is patient." Today I was challenged to demonstrate patience and to say nothing negative at all.
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<br />Today's journal section asks "Did anything happen today to cause anger toward your mate? Were you tempted to think disapproving thoughts and to let them come out in words?"
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<br />Unfortunately for people reading, I don't have much to say about today. But that is a good thing. Today was actually very easy for me. We didn't have any conflict at all, so it didn't take much effort to complete this challenge, and I don't have much to say about our experience. I think I'm generally pretty good at being patient, but today I paid extra attention to my patience. I went really well. I'm going to be continuing this, and we'll see how it works in the future.
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<br />As for tomorrow:
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<br /><b>Day 2: Love Is Kind</b>
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<br />It says patience and kindness are the cornerstones of love. "If patience is how love reacts in order to minimize a negative circumstance, kindness is how love acts in order to maximize a positive circumstance. PAtience avoids a problem; kindness creates a blessing."
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<br />It breaks kindness down into four ingredients: gentleness (be sensitive, never be unnecessarily harsh), helpfulness (meet your spouse's needs, even if yours are put on hold), willingness(be agreeable, cooperate, compromise, listen), and initiative(think ahead, then take the first step).
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<br />The dare is to do at least one unexpected gesture as an act of kindness. Mrs. Thomashttp://www.blogger.com/profile/12006863307067647599noreply@blogger.com0tag:blogger.com,1999:blog-6367624807193589745.post-35416842364570705212011-08-07T22:41:00.000-07:002011-08-07T22:51:37.894-07:00The Love DareTomorrow I will be beginning the Love Dare. What is the love dare? <i>"The Love Dare is a 40-day challenge for husbands and wives to understand and practice unconditional love. Whether your marriage is hanging by a thread or healthy and strong, The Love Dare is a journey you need to take. It's time to learn the keys to finding true intimacy and developing a dynamic marriage."</i>
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<br />The Love Dare is a book that was featured in a movie called Fireproof. Fireproof is a Christian film about a man whose marriage is failing, and headed for divorce. His father challenges him to take the love dare, and apparently this end up saving the marriage (I haven't seen the film, so I'm assuming it ends well).
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<br />I must state that I'm not a Christian. But I have been in the past, and I do find wisdom in the Bible and it's messages about love. From what I've read online, it seems the movie and the book are very much about loving God and using your connection with God to strengthen your connection with your spouse. I'm not really sure how much we'll be able to get out of it without believing in the Christian God. Although I am no longer a Christian, I am open to the messages, and I am very willing to listen to what this book has to say. The reviews I have been reading say that this program works for couples who are not Christian, so I hope that they are right and this will work for us.
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<br />The Love Dare is a 40-day program. Each day has a new theme and, you are given a new dare. Each dare has about two pages of explanation and encouragement, and then a paragraph outlining that day's dare. Then there are a couple of pages for you to use as a journal to record what you did, how it went, and your spouse's response.
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<br />I'm not going to be reading ahead, so I don't know what all of the challenges are going to be. I generally like skimming through a new book, and I really want to just go ahead and read all of the dares, but I feel it will be beneficial to just take it one day at a time. So each evening, I will be reading the next day's chapter.
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<br />I have just read the first challenge.
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<br /><b>Day 1: Love is Patient</b>
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<br />It states, <i>"Love is built on two pillars that best define what it is. Those pillars are patience and kindness. All other characteristics of love are extensions of these two attributes. And that's where your dare will begin. With patience."</i>
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<br />It goes on to explain the importance of choosing to be patient; responding to negative situations positively, being slow to anger, extending mercy to those around you. It says that anger doesn't solve problems, it makes them worse, while patience and calm stops problems in their tracks. "It is a choice to control your emotions rather than allowing your emotions to control you, and shows discretion instead of returning evil for evil."
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<br />Then there are several paragraphs about having more patience with your spouse, and how it will improve your relationship.
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<br />The challenge for today says to demonstrate patience all day and not say anything negative to your spouse. I will be completing this challenge tomorrow, and tomorrow night I will journal the results of day one, along with listing the challenge for tomorrow. Mrs. Thomashttp://www.blogger.com/profile/12006863307067647599noreply@blogger.com2tag:blogger.com,1999:blog-6367624807193589745.post-77940132471789852492011-07-22T08:31:00.001-07:002011-07-22T08:31:47.054-07:00Yesterday we learned about <a href="http://en.wikipedia.org/wiki/Pointillism">Pointillism</a>. I showed Joon some Georges Seurat paintings, and talked about painting with dots of colors. <br /><br />Then I set out the watercolors and some q-tips, and we went to work. Joon had fun with it, and she says she wants to do it again. <br /><br />This is what Joon made:<br /><br /><a href="http://smg.photobucket.com/albums/v381/willgraham/?action=view&current=Img_1068.jpg" target="_blank"><img src="http://img.photobucket.com/albums/v381/willgraham/Img_1068.jpg" border="0" alt="Photobucket"></a><br /><br />And this is mine:<br /><br /><a href="http://smg.photobucket.com/albums/v381/willgraham/?action=view&current=Img_1074.jpg" target="_blank"><img src="http://img.photobucket.com/albums/v381/willgraham/Img_1074.jpg" border="0" alt="Photobucket"></a>Mrs. Thomashttp://www.blogger.com/profile/12006863307067647599noreply@blogger.com0tag:blogger.com,1999:blog-6367624807193589745.post-47292055219950710432011-07-05T10:17:00.000-07:002011-07-05T10:18:05.001-07:00One year.Today is July 5th. A year ago today, Joon was admitted to the hospital. A year ago, we knew something was seriously wrong with her, but no one had any idea how serious it was. After three days of taking her to the ER and being sent home, we finally got someone to listen to us. Unfortunately, she suffered in the military hospital for a week with a doctor ignoring her before we managed to get her transferred to the Children's Hospital. She was hospitalized for an entire month, before she was stable enough to be released. <br /><br /><br />It's amazing what a difference a year can make. A year ago, Joon was like a newborn. She couldn't eat, drink, talk, walk, stand up, sit, or even hold her head up. All she did was lay there and cry. A year later, she's back to normal. You can't tell she was sick at all. She has made a complete recovery. <br /><br />She regained everything she lost while she was sick. While she was being treated in the hospital, she slowly learned to sit up on her own, then stand, then walk. She learned to eat, and finally, after almost a month, she learned to drink. After leaving the hospital, she went to Physical Therapy and Occupational Therapy, which helped her with her continuing recovery. With their help, she rebuilt all the strength and skills she had lost. <br /><br />When she left the hospital, she still couldn't talk, but learned to talk about gradually over the next few months. She never did get the Speech Therapy that the Children's Hospital had recommended, because she managed to learn to talk again by the time the insurance approved her evaluation. She was about 38 months old when she was evaluated, and she tested at a 48 month level. So clearly she did not need speech therapy at that point. <br /><br />She continued her PT and OT through the end of December. They re-evaluated her, and her motor skills were all good for her age level. Her strength was a little behind, but they said all she needs is something like a dance class or karate. There's a 3-year-old beginning dance class at the community center near our house, so we signed her up for that. <br /><br />She has finished her first year of preschool. At the beginning of the school year, she wasn't talking at all, and I thought maybe she wouldn't be able to go. But after we met the teacher, she said she didn't think it would be a problem, and we should let Joon try it out. I'm glad she did. Joon did wonderfully in preschool, and I think it really helped speed up her recovery. She started out very shy and didn't want to interact much with the other kids, but by May, she was doing great. Her class put on a holiday program in December, and another program in May. Joon didn't participate much in the December show, but she did during the May show. <br /><br />Here's a video of Joon's class doing their last show:<br /><br /><iframe width="425" height="349" src="http://www.youtube.com/embed/YRhqOsKFqZQ?rel=0" frameborder="0" allowfullscreen></iframe><br /><br /><br />July 4th, 2010:<br /><br /><a href="http://smg.photobucket.com/albums/v381/willgraham/?action=view&current=Dscn6412b.jpg" target="_blank"><img src="http://img.photobucket.com/albums/v381/willgraham/Dscn6412b.jpg" border="0" alt="Photobucket"></a><br /><br />July 4th, 2011:<br /><br /><a href="http://smg.photobucket.com/albums/v381/willgraham/?action=view&current=Img_0980b.jpg" target="_blank"><img src="http://img.photobucket.com/albums/v381/willgraham/Img_0980b.jpg" border="0" alt="Photobucket"></a><br /><br /><br />We took Joon to see the fireworks last night. This was particularly exciting, not just because it's always fun to celebrate with family, but because Joon had to miss out on the fireworks last year. She had been looking forward to watching the fireworks, but we were in the ER all night on the 4th. Of course while Joon was so sick, we were not at all concerned with missing the holiday. But now it's super awesome that she's back to normal and we were able to celebrate what we missed last year.Mrs. Thomashttp://www.blogger.com/profile/12006863307067647599noreply@blogger.com0tag:blogger.com,1999:blog-6367624807193589745.post-89814078687624399262010-09-12T13:38:00.000-07:002010-09-12T20:05:06.414-07:00Joon and Penny.Joon is almost 100% back to normal now. She's talking all the time, she just pronounces some things weird, like she has some kind of accent. I'm so so so happy to have her back the way she was before. Every days she says funny things and smart things. We have great conversations. The other day we were talking about mammals, and how they all make milk for their babies. She listed a bunch of different animals, telling me which ones make milk, and which don't. She asked me if monsters make milk, and I said I didn't know, and we debated whether or not they were mammals. She says she wants to climb the mountain like Captain Kirk. She keeps referencing Futurama.<br /><br />Joon started preschool a few weeks ago, and she's doing great! She's really enjoying it, and I think it's going to be good for her. She brought home her first Scholastic order forms, and I want to order her a bunch of things, but sadly we can only afford one cheap thing. Every day, they learn about a different color, and they're encouraged to wear that color. They do crafts and learn new songs, and Joon is always so excited to tell us about everything she did at school. <br /><br /><a href="http://smg.photobucket.com/albums/v381/willgraham/August%202010/?action=view¤t=Dscn8323b.jpg" target="_blank"><img src="http://img.photobucket.com/albums/v381/willgraham/August%202010/Dscn8323b.jpg" border="0" alt="Photobucket"></a><br /><br />Penny is growing crazy fast. She's doing all sorts of new stuff every day. She's grabbing things pretty well now. She can get toys into her mouth. She is desperate to get food. Every time there's food nearby, she tries to get it. She also rolls around constantly. She generally doesn't like being on her belly, but she still rolls onto her belly within minutes of being put down on her back. She's having problems sleeping now, and I think it's because she's teething. She's making all sorts of noises, and when you say Hi to her, she usually responds with a big "Hiii!" She can sit for a few seconds with her upper body propped up on her arms.<br /><br />We went to a hot air balloon festival, and Joon was pretty excited about it. Penny also seemed interested in the big brightly colored balloons.<br /><br /><a href="http://smg.photobucket.com/albums/v381/willgraham/September%202010/?action=view¤t=Dscn8444b.jpg" target="_blank"><img src="http://img.photobucket.com/albums/v381/willgraham/September%202010/Dscn8444b.jpg" border="0" alt="Photobucket"></a><br /><br />On Friday, my mom and I took the kids to Helen Hunt Falls. We hiked through the forest for a couple of hours, and played in the stream. <br /><br /><a href="http://smg.photobucket.com/albums/v381/willgraham/September%202010/?action=view¤t=Dscn8754b.jpg" target="_blank"><img src="http://img.photobucket.com/albums/v381/willgraham/September%202010/Dscn8754b.jpg" border="0" alt="Photobucket"></a><br /><br />Then we took a quick trip to the zoo. <br /><br /><a href="http://smg.photobucket.com/albums/v381/willgraham/September%202010/?action=view¤t=Dscn8769b.jpg" target="_blank"><img src="http://img.photobucket.com/albums/v381/willgraham/September%202010/Dscn8769b.jpg" border="0" alt="Photobucket"></a><br /><br />Joon turned three this past Wednesday. We had her birthday party yesterday, and it went well. Not many people showed up. Joon liked all the presents she got. We gave her a Dorothy the Dinosaur costume, a Wags the Dog costume, a plush Shifu from Kung Fu Panda, and a set of pots and pans for her toy kitchen. My mom gave her some toy food and a bunch of books. She also got a puppy Play Doh set, a mermaid playground bath toy, a pottery wheel with clay, and this fashion thing where you mix and match outfit parts and trace them. <br /><br /><a href="http://smg.photobucket.com/albums/v381/willgraham/September%202010/?action=view¤t=Dscn8828b.jpg" target="_blank"><img src="http://img.photobucket.com/albums/v381/willgraham/September%202010/Dscn8828b.jpg" border="0" alt="Photobucket"></a><br /><br /><a href="http://smg.photobucket.com/albums/v381/willgraham/September%202010/?action=view¤t=Dscn8792b.jpg" target="_blank"><img src="http://img.photobucket.com/albums/v381/willgraham/September%202010/Dscn8792b.jpg" border="0" alt="Photobucket"></a><br /><br />Joon requested a puppy cake, and my mom made one for her. Joon and I made a pinata together. She wanted it to be a blue puppy, so that's what I made. But then it ended up being just Joon and one other three year old here, so we decided not to break the pinata, and just dumped out the contents and let them take what they wanted.<br /><br /><a href="http://smg.photobucket.com/albums/v381/willgraham/September%202010/?action=view¤t=Dscn8804b.jpg" target="_blank"><img src="http://img.photobucket.com/albums/v381/willgraham/September%202010/Dscn8804b.jpg" border="0" alt="Photobucket"></a>Mrs. Thomashttp://www.blogger.com/profile/12006863307067647599noreply@blogger.com0tag:blogger.com,1999:blog-6367624807193589745.post-33185229384348156392010-08-31T20:24:00.000-07:002010-08-31T20:25:06.798-07:00CrayonsYesterday, Joon and I made crayons. Well, actually we just remade crayons. They were already crayons to begin with, we just modified them. <br /><br />A few weeks ago, Walmart had school supplies on sale. Crayola crayons were just 25 cents for a pack of 24. I picked up four packs. <br /><br />Joon helped me peel the paper off and break the crayons into pieces. I think this was a really good exercise to help her rebuild her fine motor skills. <br /><br /><a href="http://smg.photobucket.com/albums/v381/willgraham/August%202010/?action=view¤t=Dscn8303.jpg" target="_blank"><img src="http://img.photobucket.com/albums/v381/willgraham/August%202010/Dscn8303.jpg" border="0" alt="Photobucket"></a><br /><br />Joon picked out color combinations, and put them into cupcake liners. <br /><br /><a href="http://smg.photobucket.com/albums/v381/willgraham/August%202010/?action=view¤t=Dscn8304.jpg" target="_blank"><img src="http://img.photobucket.com/albums/v381/willgraham/August%202010/Dscn8304.jpg" border="0" alt="Photobucket"></a><br /><br />After a few minutes in the oven, the crayon pieces lost their form and began to melt together. I took the pan out and let them cool for a few minutes. After they solidifed, this was the result:<br /><br /><a href="http://smg.photobucket.com/albums/v381/willgraham/August%202010/?action=view¤t=Dscn8308.jpg" target="_blank"><img src="http://img.photobucket.com/albums/v381/willgraham/August%202010/Dscn8308.jpg" border="0" alt="Photobucket"></a><br /><br />We only used half of the crayons for this batch, so we'll be able to do it again later. I think next time, I'm going to mix the colors up more.Mrs. Thomashttp://www.blogger.com/profile/12006863307067647599noreply@blogger.com0tag:blogger.com,1999:blog-6367624807193589745.post-77012147989247216652010-08-26T21:56:00.001-07:002010-08-26T21:56:50.396-07:00Talking!Joon has had a language explosion the last two days. <br /><br />On Tuesday, she had her last follow-up appointment at The Children's Hospital. The doctors said she was doing great, and they said we can wean her off of the rest of her medications. That day, she pointed at Penny and said "Penny." She also said hug and kiss. <br /><br />Yesterday, she started off strong, saying butt, belly, hands, and feet. She chanted these words throughout the day, and added in several other words, including many more body parts, and lots of animals. <br /><br />Today, she said even more. She was naming things left and right. Animals, colors, objects, etc. She was talking all day. She even said some sentences. She started off with really simple sentences, like "I'm a cat." By the end of the day she was saying things like "The frog wants to look at the llamas." <br /><br />She's talking much slower than she used to, and it's like each syllable is a separate word. She's also pronouncing things a bit differently. Her vowels are a bit odd, some words sound like she has a British accent. But she's really making astounding improvements. It won't be long until she's back to her normal self. I'm just amazed at her strength and pluck.Mrs. Thomashttp://www.blogger.com/profile/12006863307067647599noreply@blogger.com0tag:blogger.com,1999:blog-6367624807193589745.post-85605841965540271762010-08-22T21:53:00.000-07:002010-08-26T21:55:57.909-07:00Happy Baek-il, Penelope!Penelope is 100 days old today! <br /><br />It's a Korean tradition to celebrate a baby's 100th day of life. In the past, many babies didn't survive through the first few months. If a baby made it to 100 days, they would likely make it to their first birthday. If a child made it to their first birthday, they had a good chance of surviving to adulthood. So a long time ago, it became customary to wait until the baby was 100 days old, and have a big party. Babies are dressed in the traditional Korean dress, called a Han-Bok, and displayed with lots of fruit, rice cakes, and other food.<br /><br /><a href="http://smg.photobucket.com/albums/v381/willgraham/August%202010/?action=view¤t=Dscn8170b.jpg" target="_blank"><img src="http://img.photobucket.com/albums/v381/willgraham/August%202010/Dscn8170b.jpg" border="0" alt="Photobucket"></a><br /><br /><lj-cut><a href="http://smg.photobucket.com/albums/v381/willgraham/August%202010/?action=view¤t=Dscn8175b.jpg" target="_blank"><img src="http://img.photobucket.com/albums/v381/willgraham/August%202010/Dscn8175b.jpg" border="0" alt="Photobucket"></a><br /><br /><a href="http://smg.photobucket.com/albums/v381/willgraham/August%202010/?action=view¤t=Dscn8176b.jpg" target="_blank"><img src="http://img.photobucket.com/albums/v381/willgraham/August%202010/Dscn8176b.jpg" border="0" alt="Photobucket"></a><br /><br /><a href="http://smg.photobucket.com/albums/v381/willgraham/August%202010/?action=view¤t=Dscn8181b.jpg" target="_blank"><img src="http://img.photobucket.com/albums/v381/willgraham/August%202010/Dscn8181b.jpg" border="0" alt="Photobucket"></a><br /><br /><a href="http://smg.photobucket.com/albums/v381/willgraham/August%202010/?action=view¤t=Dscn8182b.jpg" target="_blank"><img src="http://img.photobucket.com/albums/v381/willgraham/August%202010/Dscn8182b.jpg" border="0" alt="Photobucket"></a><br /><br /><a href="http://smg.photobucket.com/albums/v381/willgraham/August%202010/?action=view¤t=Dscn8184b.jpg" target="_blank"><img src="http://img.photobucket.com/albums/v381/willgraham/August%202010/Dscn8184b.jpg" border="0" alt="Photobucket"></a></lj-cut>Mrs. Thomashttp://www.blogger.com/profile/12006863307067647599noreply@blogger.com0tag:blogger.com,1999:blog-6367624807193589745.post-13284211642240460412010-08-15T23:31:00.001-07:002010-08-15T23:31:50.643-07:00Three months!Penelope is three months old! <br /><br />We earned this ribbon:<br /><br /><A HREF="http://gynosaur.com/bf_ribbons.php"><IMG SRC="http://www.gynosaur.com/assets/ribbons/ribbon_rosequartz_3m.gif"></A><br /><br />1) <b>Baby Name and Age:</b> Penelope, three months<br />2) <b>Weight/length/clothing size being worn:</b> She's wearing mostly 3-6 months, and some 6-9 months. <br />3) <b>Food! Formula? Breastmilk? Combo?:</b> She's 100% breastfed, she's never had a bottle.<br />4) <b>Sleep habits:</b> She sleeps great! Most nights, she sleeps about 10 hours straight, then gets changed and fed, and usually sleeps another hour or two. <br />5) <b>Is baby on a schedule? If so describe:</b> Yeah, we wake up in the morning, get changed and fed, then play for a few hours. Take a morning nap, play for a couple of hours, take an afternoon nap, play for a few hours, and then go to bed. <br />6) <b>Whats driving you crazy, if anything:</b> Nothing much. She hates being in a car seat. <br />7) <b>Milestones of course:</b> Sleeping through the night, rolling all over the place, babbling like crazy, teething something fierce, reaching for and picking up toys, sucking her thumb. <br />8) <b>How are you doing in general:</b> Pretty good, considering how crazy things have been. <br />9) <b>Are your health and weightloss concerns going well?:</b> Alright. I've lost about half of the weight. I'm not worried about it. <br />11) <b>Pictures:</b> <br /><br /><lj-cut text="comparison photos">One week:<br /><br /><a href="http://smg.photobucket.com/albums/v381/willgraham/?action=view&current=oneweek.jpg" target="_blank"><img src="http://img.photobucket.com/albums/v381/willgraham/oneweek.jpg" border="0" alt="Photobucket"></a><br /><br />Three months:<br /><br /><a href="http://smg.photobucket.com/albums/v381/willgraham/August%202010/?action=view¤t=threemonths.jpg" target="_blank"><img src="http://img.photobucket.com/albums/v381/willgraham/August%202010/threemonths.jpg" border="0" alt="Photobucket"></a>Mrs. Thomashttp://www.blogger.com/profile/12006863307067647599noreply@blogger.com0tag:blogger.com,1999:blog-6367624807193589745.post-41199855794909083072010-08-09T21:56:00.000-07:002010-08-10T16:14:00.798-07:00First week home.Things have been busy around here. I've been working on writing this for a week. <br /><br />This whole ordeal we've been going through has brought us so much love and really showed me how awesome people are. I am so amazed at all the support we've been receiving. I had several friends bring us meals while we were still at Evans. Two of my friends even offered to take Penny for a while and nurse her because she doesn't take bottles. People sent cards, balloons, and packages. Friends called, visited, invited me over to talk, and offered hugs and ice cream. I've received hundreds of comments from random people wishing Joon well, and countless people have prayed or chanted for her. <br /><br />And then there were all the volunteers at the Children's Hospital. Almost every day, kids came around with a cart, giving away coffee, tea, and popcorn. One day, they came by with wagons full of donated blankets, and Joon got a Nemo quilt. We had many visits from the super sweet dogs in the Prescription Pet Program. A Harley Owners Group hosted some pizza parties, and a barbeque where they let the kids sit on their motorcycles. And one day they even had a massage therapist giving free massages! <br /><br />A lot of people have asked if they can do anything to help us. Well, I think the best thing would be to send a card or letter of thanks to the wonderful doctors, nurses, and other employees at the Children's Hospital. Or if you're crafty at all, consider making a blanket and donating it in Joon's name. If anyone does make a blanket to donate, I'd love it if you'd snap a picture and show me. <br /><br />The address for the hospital:<br /><br />The Children's Hospital<br />13123 East 16th Avenue<br />Aurora, CO 80045<br /><br /><br /><a href="http://smg.photobucket.com/albums/v381/willgraham/July%202010/?action=view¤t=Dscn7402b.jpg" target="_blank"><img src="http://img.photobucket.com/albums/v381/willgraham/July%202010/Dscn7402b.jpg" border="0" alt="Photobucket"></a><br /><br />Joon got discharged from the hospital last Monday. It's so great to have Joon home. She's so much happier here, and that helps her recovery. It's so nice to be in our home, sleeping in our own beds, and making our own meals. Joon is glad to have all of her books and toys (including her new kitchen my mom bought her). She was excited to see the cats and fish and turtles again. <br /><br />Joon's doing great. She's pretty much back to normal now. She's walking normally, running, jumping, going up and down the stairs, etc. She's eating and drinking. She's just having a bit of trouble with her fine motor skills, and she's still not talking yet. She's babbling a lot, and trying to learn to talk again. I'm still trying to get her speech therapy set up. Tricare is being stupid about it and making it a huge hassle. <br /><br />Joon still has her PICC line in, because she had to get two more doses of rituximab and that has to be done through the PICC. We have to flush it a couple of times a day, and have to have a nurse come out to change the dressing and everything. They sent us a big package of supplies, hundreds of syringes and tiny bottles of saline and heparin. It seems so wasteful to me that the syringes are all single-use. I understand why they can't be reused with the PICC line, but it's still a lot of syringes to be throwing away. <br /><br />On Wednesday, we had to go back up to Denver because Joon had an appointment with the rheumatologist that's going to be in charge of her care now. One of the med students that worked with Joon when we first got to the hospital is now with the rheumatologist, so she knew how bad Joon was before. They were pretty stoked to see how much Joon has improved. The rheumatologist said she's worked with about 10-12 kids with NMDA encephalitis, and they had the same treatments Joon has been receiving, and all had complete recoveries. She's really optimistic about Joon. <br /><br />Friday we had another appointment, for Joon to get her weekly Rituximab infusion. She gets that through her PICC line, and it takes a few hours. We had to stay another hour after that was done to make sure she didn't have any reaction. The appointment was at 8AM, so we had to get up really early to leave the house at 5:30, but the kids slept the whole way there. After the appointment, we went ate lunch, and then walked around the mall for a while. We'll have to go back this Friday at 8 AM again for her last infusion. <br /><br /><a href="http://smg.photobucket.com/albums/v381/willgraham/July%202010/?action=view¤t=Dscn7412b.jpg" target="_blank"><img src="http://img.photobucket.com/albums/v381/willgraham/July%202010/Dscn7412b.jpg" border="0" alt="Photobucket"></a><br /><br /><br />Penny is growing so fast now. She's rolling all over the place, and always pushing and kicking so much. She's still working on those two teeth, and so she drools and chews a lot. She babbles all the time, and she laughs with this ridiculously cute laugh, it's like she's yelling "HA! HA!" <br /><br />She loves to stand. We have this exersaucer thing that was a gift for Joon when she was a baby. Joon would never put up with things like that, she needed to be held constantly, so we never even took it out of the box until now. Penny has been using it now, and she loves it! She can't reach the toys yet, but she likes to look at them. <br /><br />Penny has been sleeping through the night since we've been home. She was doing pretty well while we were in the hospital, but now she's doing great! She went to bed at 8 last night, and slept until 7 this morning! I just hope it continues this way. She's also been napping well. She generally goes down easily when I swaddle her. <br /><br />She is sucking her thumb now, which is so cute. She has learned to grab things, though she doesn't quite know how to let go yet. She swipes at toys, and she has discovered her toes. When I'm changing her diaper, she helps me out by grabbing her toes and lifting her butt up in the air. <br /><br /><a href="http://smg.photobucket.com/albums/v381/willgraham/July%202010/?action=view¤t=Dscn7379b.jpg" target="_blank"><img src="http://img.photobucket.com/albums/v381/willgraham/July%202010/Dscn7379b.jpg" border="0" alt="Photobucket"></a><br /><br />I'm thinking of starting Elimination Communication with her. EC is when you follow a young baby's cues and get them to use the toilet. It worked really well with Joon, but I didn't think we'd be able to do it with Penny because our attention is split between the two kids. I'm going to get a cheap little potty chair, and try it out. It can't hurt to try. She seems ready for it. Actually, I probably should have started a long time ago, but you know, we've been busy. <br /><br />I'm so glad she's such an easy baby. Joon was very high-need, and I don't know if I would have been able to survive this last month if Penny was as needy as Joon was at her age. I am so lucky to have a mellow baby while I REALLY needed her to be so. It's so great to be able to put her down in her crib and have her go to sleep! I was never able to do that with Joon. Even up until she was two, she had to be nursed to sleep in our bed, and then I'd try to slip away, and half the time she'd wake up and I'd have to start over again. She still occasionally has a fussy night, but overall she's so easy. <br /><br />Penny is almost 3 months old now. She'll be turning 100 days old in just a couple of weeks, which means we'll be celebrating her Baek-il! The Baek-il is a Korean tradition, celebrating a baby's 100th day of life. In the past, the infant mortality rate was so high, it was a pretty big deal for a baby to survive the first few months. Penny's Baek-il is on the 22nd. We will be making Korean food, and a birthday cake.Mrs. Thomashttp://www.blogger.com/profile/12006863307067647599noreply@blogger.com1tag:blogger.com,1999:blog-6367624807193589745.post-90916405761224540592010-08-01T11:31:00.001-07:002010-08-01T11:31:32.584-07:00Penelope talking.<object width="480" height="385"><param name="movie" value="http://www.youtube.com/v/AJhQXgDewNU&hl=en_US&fs=1?rel=0"></param><param name="allowFullScreen" value="true"></param><param name="allowscriptaccess" value="always"></param><embed src="http://www.youtube.com/v/AJhQXgDewNU&hl=en_US&fs=1?rel=0" type="application/x-shockwave-flash" allowscriptaccess="always" allowfullscreen="true" width="480" height="385"></embed></object>Mrs. Thomashttp://www.blogger.com/profile/12006863307067647599noreply@blogger.com0tag:blogger.com,1999:blog-6367624807193589745.post-61644581893188468272010-07-31T23:15:00.000-07:002010-07-31T23:34:20.173-07:00Almost ready.Joon is doing really great. She's walking almost normally now, she's pretty much back to how she was before, except she's still not talking. She had a few words, but she stopped saying those several days ago. Right now she's babbling like Penelope. We should be going home Monday. They were going to transfer her down to the rehab floor for a couple of weeks of intensive therapy, but now she doesn't need it anymore. All she needs is the speech therapy. They're going to do a blood cell count just to make sure she's good to go. They've been preparing us for discharge, setting up appointments and getting speech therapy set up for us. They're teaching us how to care for her PICC line, doing things like drawing up saline, flushing the line and changing the caps. <br /><br />Penny is getting so big. She's sleeping pretty well now, we just have to swaddle her. She wants to stand all the time. Whenever her feet touch anything, she pushes off to stand. Her two teeth are still right below the surface of her gums. They've been there for more than a month, I don't know what's taking them so long. But Joon was teething for two months before her first teeth came in. <br /><br />Joon is so sweet to Penny. She's always trying to give her toys and things. She likes to put her little animals on top of her, or try to get her to hold them. Today she put a bunch of cookie crumbs on her. She touches her so gently and carefully, and she's so bashful about it.Mrs. Thomashttp://www.blogger.com/profile/12006863307067647599noreply@blogger.com0tag:blogger.com,1999:blog-6367624807193589745.post-1848744661668997052010-07-25T21:18:00.000-07:002010-07-25T21:19:11.676-07:00Getting better.Joon walked today! She keeps trying to climb down out of the bed all the time. Sometimes she's not allowed to because she's hooked up to various things that we can't move. But whenever possible, we encourage her to get out of bed. Now, she's able to climb down and stay on her feet and easily cruise along the side of the bed while holding on. Then she voluntarily let go, and walked a few steps over to the chair, then kept walking back and forth between the furniture. She's still wobbly, but she does it! So exciting! <br /><br />So right now, she's doing great in everything, except for talking and drinking. She just doesn't want to drink at all. Today, she actually took several sips of juice, I think it was about half of a juice box, so about two ounces. This is the first time she's drank anything in three weeks! But that was this morning, and she's been refusing again since then. <br /><br />She's still not talking. She was saying a few things, but now the past couple of days she doesn't want to talk. She is finally getting pretty consistent with nodding or shaking her head for yes and no, and we're working on sign language. She used to sign a lot, but then she stopped signing after she started talking, so she doesn't remember any signs, and I don't remember much either. <br /><br />Today the doctors said Joon may be able to move down to the rehab floor as early as tomorrow! They want her to be down there for intensive therapy for a while, probably about two weeks. They have outpatient PT, OT, and speech therapy, but only 3 times a week. She's going to need it three times a day, seven days a week, so she'll have to stay here for that.Mrs. Thomashttp://www.blogger.com/profile/12006863307067647599noreply@blogger.com1tag:blogger.com,1999:blog-6367624807193589745.post-29361787713082273642010-07-24T18:51:00.000-07:002010-07-24T18:52:34.602-07:00Presents.Joon received a package full of toys from an online friend and her bbgurls. She loves them, especially this yellow monster that makes noise when you throw it or hit it. It's great because she's throwing it around and actually crawling to go pick it up! <br /><br /><a href="http://smg.photobucket.com/albums/v381/willgraham/?action=view¤t=Dscn6843b.jpg" target="_blank"><img src="http://img.photobucket.com/albums/v381/willgraham/Dscn6843b.jpg" border="0" alt="Photobucket"></a><br /><br /><object width="480" height="385"><param name="movie" value="http://www.youtube.com/v/vD9aVMRq4ec&hl=en_US&fs=1?rel=0"></param><param name="allowFullScreen" value="true"></param><param name="allowscriptaccess" value="always"></param><embed src="http://www.youtube.com/v/vD9aVMRq4ec&hl=en_US&fs=1?rel=0" type="application/x-shockwave-flash" allowscriptaccess="always" allowfullscreen="true" width="480" height="385"></embed></object><br /><br />Thanks so much, Megan! <3Mrs. Thomashttp://www.blogger.com/profile/12006863307067647599noreply@blogger.com0tag:blogger.com,1999:blog-6367624807193589745.post-18414094538081001172010-07-23T07:19:00.000-07:002010-07-23T07:30:11.599-07:00The last few days.Tuesday had some goods and some bads.<br /><br /> Good: They are pretty confident Joon's condition isn't caused by anything contagious, so she's off of precautions, and we got the all-clear to take her out of the room. We put her in the wheelchair, and took her around the floor. We went to the end of the hall, where the walls are all covered in windows, and Joon looked out the windows.<br /><br /> Bad: She had four seizures. They've been trying to wean her off of one of her seizure meds, and it looks like that's not working out well. When she has her seizures, she still functions normally, but her eyes just bounce around. Sometimes her eyebrows bounce too. But everything else is normal. She still has purposeful movement, and she can vocalize. So they're called complex partial seizures.<br /><br /> Good: We had a nice visit from some friends. Unfortunately, Joon wasn't really interested in playing with them, probably because she wasn't feeling good, but I enjoyed seeing them.<br /><br /> Bad: Joon vomited twice. She didn't want to eat much of her dinner, and seemed like she didn't feel good. Then she threw up what little she had eaten, and seemed happier after that. Then when we were giving her the evening meds, she threw up again. She hasn't done it again since then, so we think it was probably just something she ate, and not another illness.<br /><br /><br />Wednesday was mostly good. They started the IVIG treatment, and I think it's helping.<br /><br />The physical therapist and occupational therapist took us down to the therapy gym. Joon was really not in the mood at first, but she slowly came around, and she eventually played with this ball with different animal buttons on it.<br /><br />Joon had three seizures. They were the complex partial seizures again. They decided to hook her up to the EEG again, for another 24 hours, to see if they could capture one of the seizrues so they could see what was going on.<br /><br />My mom came up, and brought a lot of Joon's toys. She stayed with Joon for the night, and Andrew and I went home. We watched last week's new Futurama, and I had a hard lemonade and it made me drunk, lol.<br /><br /><br />We came back up here yesterday. We had a lot of delays, so we didn't get here until the afternoon.<br /><br />We had to give up our goldfish. We have a 125 gallon tank, which had 9 fancy goldfish (mostly orandas). While Joon has been sick, we've been staying in the hospital and only coming home about once a week, for a night at a time. My mom has been feeding them, but we haven't had time to do anything else with them. The aquariums haven't been cleaned in about a month. When we went home this time, we were down two fish. We know we're going to be at the hospital for a few more weeks, so the rest of the fish wouldn't have very good chances. So we decided it would be in their best interest to be elsewhere. It sucks because we had some really nice goldfish, but it had to be done. We kept Joon's goldfish, and put him into the 40 gallon, and moved the turtles into the 125.<br /><br />Joon spent the entire day playing with my mom and the toys she brought from home. She was in a much better mood than she had been during the time she's been sick. She walked a few steps while holding onto the bed. While she was sitting on the couch, she tried to get into a standing position. And she said "mouth" and "hey."<br /><br />She had three seizures, and they were longer than the previous ones had been. She finished her EEG, and they removed the electrodes. The oil they use to remove the electrodes left her hair all nasty, and her hair is tangled from being wrapped up for 24 hours. So we're going to have to wash her hair in a basin again. But I forgot to bring her goggles and the shampoo she likes from home. So hopefully my mom will bring them and we'll be able to do that today.<br /><br />Since Joon's contact precautions have been lifted, there's been a different dog trying to visit her every day. The hospital has a Prescription Pet Program, where volunteers bring their well-mannered dogs to visit the kids. It's a great program, because it does a lot to help raise the kids' spirits. Unfortunately, they've been showing up when Joon is not in a good mood, so she hasn't wanted to play with the dogs so far. But each dog has business cards with their picture, so we've got a collection of three doggy business cards.<br /><br />Joon received a gift of a dozen balloons and a bear, from some mysterious online friends! She loved them!<br /><br /><object width="480" height="385"><param name="movie" value="http://www.youtube.com/v/lQ3dN-JO0T8&hl=en_US&fs=1?rel=0"><param name="allowFullScreen" value="true"><param name="allowscriptaccess" value="always"><embed src="http://www.youtube.com/v/lQ3dN-JO0T8&hl=en_US&fs=1?rel=0" type="application/x-shockwave-flash" allowscriptaccess="always" allowfullscreen="true" width="480" height="385"></embed></object>Mrs. Thomashttp://www.blogger.com/profile/12006863307067647599noreply@blogger.com0tag:blogger.com,1999:blog-6367624807193589745.post-39487314983864396782010-07-19T22:00:00.000-07:002010-07-19T22:08:11.976-07:00Fast forward.Today has left me feeling optimistic. <br /><br />Joon started out in a bad mood. She didn't want to cooperate with her therapists, and she was very fussy. But then we opened the window shade, and took her over to the window. We sat on the fold out couch that we've been sleeping on, and looked out the window. <br /><br /><a href="http://smg.photobucket.com/albums/v381/willgraham/?action=view&current=Dscn6598b.jpg" target="_blank"><img src="http://img.photobucket.com/albums/v381/willgraham/Dscn6598b.jpg" border="0" alt="Photobucket" /></a><br /><br /><a href="http://smg.photobucket.com/albums/v381/willgraham/?action=view&current=Dscn6603b.jpg" target="_blank"><img src="http://img.photobucket.com/albums/v381/willgraham/Dscn6603b.jpg" border="0" alt="Photobucket" /></a><br /><br /><a href="http://smg.photobucket.com/albums/v381/willgraham/?action=view&current=Dscn6606b.jpg" target="_blank"><img src="http://img.photobucket.com/albums/v381/willgraham/Dscn6606b.jpg" border="0" alt="Photobucket" /></a><br /><br />We played on the couch for a while, and then Joon started trying to climb off the bed. She turned over and swung her legs over the side of the bed, then lowered herself to her feet. <br /><br /><a href="http://smg.photobucket.com/albums/v381/willgraham/?action=view&current=Dscn6612b.jpg" target="_blank"><img src="http://img.photobucket.com/albums/v381/willgraham/Dscn6612b.jpg" border="0" alt="Photobucket" /></a><br /><br /><a href="http://smg.photobucket.com/albums/v381/willgraham/?action=view&current=Dscn6620b.jpg" target="_blank"><img src="http://img.photobucket.com/albums/v381/willgraham/Dscn6620b.jpg" border="0" alt="Photobucket" /></a><br /><br />She was all wobbly and leaned on the couch, but then she got her legs straightened out under her, she turned around, and even let go for a few seconds. <br /><br /><a href="http://smg.photobucket.com/albums/v381/willgraham/?action=view&current=Dscn6624b.jpg" target="_blank"><img src="http://img.photobucket.com/albums/v381/willgraham/Dscn6624b.jpg" border="0" alt="Photobucket" /></a><br /><br />It was awesome. <br /><br />And then I put down the tumbling mat the physical therapist brought yesterday, and Joon and I played on the floor for a long time. She rolled around and did all sorts of things. It was a huge improvement over the past few days. <br /><br />Joon is still not drinking, and we need to find out why, and figure out how to get her drink. The physical therapist watched her eat breakfast, and then she asked someone from the swallow team to come in and watch her eat lunch. They were talking about doing a swallow study, which would involve taking her down to radiology again and doing an x-ray video while she's eating and drinking, but they decided to just do an informal study, and just watch her eat. The woman from the swallow team said it seems like the liquid just comes up too quickly through the straw, and she gets too much and gets overwhelmed by it, and that makes her scared to try to drink. So they gave us some thickener to add to her drinks, and we just have to keep offering her liquids and she should eventually drink. <br /><br />Right now, the neurologists are no longer sure it's ADEM, because of the way she's been responding to the treatment. They're saying it may be NMDA encephalitis. They tested for it, but it'll take weeks to get the results. But the treatment is the same in the beginning, just the steroids and then IVIG, and then if those didn't work, another medication. But that would wait until we get the test results. So right now, we're continuing with the previous plan.Mrs. Thomashttp://www.blogger.com/profile/12006863307067647599noreply@blogger.com2tag:blogger.com,1999:blog-6367624807193589745.post-75622701538539037652010-07-18T22:49:00.000-07:002010-07-18T22:53:10.204-07:00Worry.Joon's condition has remained unchanged over the past few days. She has improved a lot in the past week and a half, but she's still nowhere near where she was before. I'd say she's on the level of a 9 month old right now. She can sit up unassisted for short periods of time, but she can't stand without support. She can now roll over and crawl a little bit. She's eating well again, but she still can't drink. The only thing she can say right now is "Yeah." <br /><br />Before she got sick, she used to be quite advanced in her speech. She had started talking early, and quickly had a very large vocabulary. She loved talking, and would spend all day chattering away, all the time. She'd tell everyone long stories about things she had done, and she could spend twenty minutes telling you all about going for a walk around the block. She'd make up fabulous stories about her toy animals, and make up dialog for them. She talked for hours and hours every day, and now, all she can say is "Yeah." <br /><br />A few days ago, I was watching some videos of Joon just being her normal self before she got sick. She was talking and singing, running and jumping. Andrew said "So she's never going to be like that again?" I told him I don't know, the doctors here are really great, and I'm sure they'll be able to help her. But I wasn't sure. For a long time, I thought she'd be back to normal any day. I was confident that this would just go away. But now, I don't know. Most of the time, probably 90% of the time, I think she'll be okay. But the rest of the time, I'm scared. I'm terrified that she's recovered as much as she's going to, and this will be it. <br /><br />When I was reading about ADEM, some things said she had a good outlook, and some things made it seem more negative. Overall, I felt like she would probably have a good prognosis, and I was feeling okay about this. <br /><br />I asked the doctor today what he thought of her long-term prognosis. He said he doesn't know, she might make a full recovery, she might recover half of what she lost, or she might not recover any more at all. He said each possibility is equally likely. <br /><br />I'm having a hard time keeping positive about it. It's all just so uncertain. We have no way of predicting how she's going to do. She could be like this for the rest of her life. <br /><br /><br />I have a few videos of her that were recorded in May and June, and some from the past week. <br /><br />This one was from May 15, right after Penelope was born. Joon was jumping on the trampoline, then she "read" a book to Penny, making up the words as she went along. Then she sang Penny her own version of Hush Little Baby, promising that Grandma will buy her lots of things, like a balloon, a whale, and a watermelon. <br /><br /><object width="480" height="385"><param name="movie" value="http://www.youtube.com/v/Zod3XiCGVCI&hl=en_US&fs=1?rel=0"></param><param name="allowFullScreen" value="true"></param><param name="allowscriptaccess" value="always"></param><embed src="http://www.youtube.com/v/Zod3XiCGVCI&hl=en_US&fs=1?rel=0" type="application/x-shockwave-flash" allowscriptaccess="always" allowfullscreen="true" width="480" height="385"></embed></object><br /><br />This was from June, and she was talking about The Wiggles, and what each one does, Anthony eats, Murray plays music, Jeff sleeps, etc. We talk about the "Where's Jeff?" song, which talks about places Jeff sleeps. Then she talks about the birds eating dragonflies. <br /><br /><object width="480" height="385"><param name="movie" value="http://www.youtube.com/v/mgD8k9L6vq4&hl=en_US&fs=1?rel=0"></param><param name="allowFullScreen" value="true"></param><param name="allowscriptaccess" value="always"></param><embed src="http://www.youtube.com/v/mgD8k9L6vq4&hl=en_US&fs=1?rel=0" type="application/x-shockwave-flash" allowscriptaccess="always" allowfullscreen="true" width="480" height="385"></embed></object><br /><br />The next two videos show what Joon is like now. The first video is of her relearning to eat, and the second is of her playing with her dad. They both show how her motor skills are impaired, and she can't talk. <br /><br /><object width="480" height="385"><param name="movie" value="http://www.youtube.com/v/YwyXqkS1MkQ&hl=en_US&fs=1?rel=0"></param><param name="allowFullScreen" value="true"></param><param name="allowscriptaccess" value="always"></param><embed src="http://www.youtube.com/v/YwyXqkS1MkQ&hl=en_US&fs=1?rel=0" type="application/x-shockwave-flash" allowscriptaccess="always" allowfullscreen="true" width="480" height="385"></embed></object><br /><br /><object width="480" height="385"><param name="movie" value="http://www.youtube.com/v/TKhB7jywyOk&hl=en_US&fs=1?rel=0"></param><param name="allowFullScreen" value="true"></param><param name="allowscriptaccess" value="always"></param><embed src="http://www.youtube.com/v/TKhB7jywyOk&hl=en_US&fs=1?rel=0" type="application/x-shockwave-flash" allowscriptaccess="always" allowfullscreen="true" width="480" height="385"></embed></object><br /><br />It just breaks my heart to see the huge difference. Watching these videos and thinking about how she was before, I miss my little girl, even though she's right here next to me.Mrs. Thomashttp://www.blogger.com/profile/12006863307067647599noreply@blogger.com1tag:blogger.com,1999:blog-6367624807193589745.post-57277771842062457022010-07-17T23:00:00.000-07:002010-07-17T23:02:27.827-07:00Diagnosis and prognosis.Joon is not doing as good as she was two days ago. She's still good, though. She's just not talking as much as she was that day. She mostly just says "yeah" and that's pretty much it. It seems like she tries to say "no", but just gets the N sound. The doctors said it's normal for her progress to go up and down a bunch of times over the first couple of weeks. <br /><br />She's had no appetite today. She ate a good amount of breakfast, but then no lunch, and only a chicken nugget for dinner. We think it's probably due to her seizure medication. It's hard on the stomach, and so they're also giving her zantac to help out with that, but maybe it's not helping enough. I'm pretty uncomfortable with the amount of medications she's on, but it's supposed to be really short-term, so I think I can deal with it. If the doctors want to continue the meds for longer, I'll want to discuss other options. <br /><br />Today the neurologists said it looks like the swelling is probably more global rather than localized to the cerebellum. So they're calling it Acute disseminated encephalomyelitis (ADEM) now instead of Cerebellitis. It's similar to Multiple Sclerosis, but it's caused by some sort of virus getting into her brain. The average recovery time is 1-6 months. 50 to 75% of cases have a full recovery, and up to 70 to 90% recover with some minor disability. <br /><br />The standard treatment is to start with high doses of IV steroids, and then lower doses orally for 3-6 weeks. Also, high doses of IVIG, which is intravenous immunoglobulin, which is where they take antibodies from over 1,000 people, and mix them together, and inject them into Joon. This is supposed to be the best course of treatment, and this is what we'll be doing. I think she should have a pretty good prognosis with this treatment. <br /><br />The prognosis is generally better in kids that are older, in one study, younger kids ended up with a slightly lower IQ, and behavioural problems. But the prognosis is also better in cases that present with fever, and Joon has had a fever. So I'm going to stay positive that she'll have a full and speedy recovery.Mrs. Thomashttp://www.blogger.com/profile/12006863307067647599noreply@blogger.com0tag:blogger.com,1999:blog-6367624807193589745.post-68005024019013417052010-07-16T22:19:00.001-07:002010-07-16T22:19:47.542-07:00Two monthsYesterday was a great day for Joon. She made huge advances in her recovery. Unfortunately I'm still here at home until after Penelope's appointment tomorrow. But I did get to see her on webcam.<br /><br />Andrew went back up there in the morning. He talked to the neurologist again, and looked at the MRI scans. The MRI showed swelling in her cerebellum, which is shat caused her to not be able to talk, eat, stand, or anything else. They decided to give her steroids for a few days to help with the swelling. While the doctor was there, Joon had another seizure. Her eyes were bouncing up and down, and her eyebrows twitching. Later in the day, she had another seizure that we noticed.<br /><br />After lunch, Joon's recovery started progressing in fast forward. She started sitting up on her own, and playing with toys. Then she started TALKING. She's talking now!<br /><br />Andrew and I set up our webcams and I got to see Joon playing. She looked at me and waved and talked. I showed her the cats, and she tried to say Sagwa.<br /><br />Penelope turned two months old, and I took her comparison photo on the blanket I made for her.<br /><br />Two months:<br /><br /><a href="http://smg.photobucket.com/albums/v381/willgraham/?action=view&current=twomonths.jpg" target="_blank"><img src="http://img.photobucket.com/albums/v381/willgraham/twomonths.jpg" alt="Photobucket" border="0" /></a><br /><br />Penelope had her two month checkup today. She's in perfect condition. She weighs 11 pounds and 2 ounces, and she's 59 centimeters long. Her head circumference is 38.5 centimeters. She's met all the expected milestones.<br /><br />We headed back up to Denver after Penelope's appointment. Penny slept the whole way there. Joon is still doing good, but not as good as she was yesterday. She wanted pizza for dinner, but when it arrived, she just wanted to eat french fries. She kept trying to climb down out of the bed, even though she can't really stand on her own yet. She had another EEG today, just for an hour, to see how her brain activity has improved in the last couple of days. She's sleeping now, and hopefully she'll sleep through the night like she did last night.Mrs. Thomashttp://www.blogger.com/profile/12006863307067647599noreply@blogger.com0