Butterfly Blessings

Today was a very long and emotional day, in a good way. Butterfly had an appointment with Dr.W. We received the results from all of the tests he has been doing. It is encouraging in that it is good news, but mostly stuff I had already figured out.

She is functioning at the level she was when she was 8. What does this mean, exactly? Well, in math, she is on a 4th grade level. She reads on a 9th grade level. Her common knowledge is 4th grade. Common knowledge is the cumulative stuff that people learn like social skills, science and social studies facts. Everything else is 7th grade. She has always been quite bright. If she continues functioning at the level she was at the time of the tests, she will still be OK. If an 8 year old tested at these levels, they would be outside the bell curve. As a 14 year old, it puts her in the middle range, toward the low end, of intelligence. As an adult, if she performs the same, then she will still be in the functioning range, just not at the same end of the curve. This is all good news. It is also all stuff I had figured out.

Other tidbits include that she cannot learn two difficult subjects in a row. Her brain needs a break to digest the information. This is a good idea for all people, but a necessity in her brain. She has gone back to sensory learning. She needs to be taught in a hands-on way. She has difficulty with recall, but not so bad she can't function. There's so much more and I am glad that the paper report will be mailed to me soon, because I am missing some things. When that much information is thrown at you (it was a 2 hour meeting), it is hard to digest it all.

Dr.W also said that he expects her to stay stagnant, as in not continue to get better. He said there is always a possibility, because the human brain is so complicated and doesn't always follow a pattern, as evidenced by some of her symptoms. Her symptoms have presented in a somewhat atypical manner. Therefore, it makes it harder to predict if she will get better.

But God has other plans. This afternoon, after leaving Dr.W's office, I drove past a few houses that we used to live in. She remembered one. As we were driving past it, she remembered everything up through her 10th birthday. That is about 15 months from where she had recently progressed to. This is huge. Especially after just being told that they expect her to remain stable, not gaining and not losing any ground. Within 2 hours, she had done the opposite of that prediction. That is God. That is all God.  

To Blog Or Not To Blog

I am contemplating taking this blog down because these things are so ultra personal. And putting them out there makes me so vulnerable. But there is something validating about knowing someone can read them. So for now, I am undecided.

How Old Was I?

My age at the time of any given childhood event is a hard thing to comprehend. I have to do math and figure and sometimes I get it wrong. There is an order of things. I know who my "step-dad" was at any given time, but not always how old I was. It was either before or after a certain event, a certain person, came into my life. A timeline would be good, but it makes my head hurt. Maybe another day. I was in school, early elementary. It was after Leon; after and before I lived in Denver. That would be why things get so confusing. I moved around a lot. And sometimes back to the same places. So the memories get jumbled together regardless of age. How old was I? Maybe I will get back to this one.

I was seven and eight. See that wasn't so hard. So, where was I? What is the purpose of this post? I don't know. This figuring out exactly how old I was and trying to put it in a coherent form stretched me. Maybe I will post more later.

Snapshot Saturday

August 2007

When Butterfly first started attending school in a traditional setting again in 6th grade, she had a hard time learning all the facts presented in book format. We had done so much of her learning in a hands-on way that lists of facts were meaningless and overwhelming to her. So, each weekend, she would bring home whatever book she was struggling the most in and we would do the projects and activities that were looked over. Here, she was making a salt map to learn the names for land and water such as inlet, peninsula, butte, etc. At the beginning of the day, she was overwhelmed and thought she would never get it, she thought she was stupid and hated school. When she finished the map, she knew all the names and loved learning again. After a few weeks, we didn't need to do so much of this and she was able to learn the facts in the way they were presented at school.

Food Issues

When memories of life with him invade my mind, I have food issues. There are three different things that happen. Either I am not hungry and do not eat, everything makes me feel like I am going to vomit, or I inhale everything so fast like I haven't had food in days and may not be given the chance to eat again any time soon. I understand the root of all three of these responses. The first and the last are connected and kind of obvious. He would withhold food. For days on end. And sometimes eat in front of me. Forcing me to watch him eat. So when I was given food, I would inhale it because I might not get the chance again. The feeling like I am going to vomit is a different explanation. If he found out I had an aversion to a specific food, he would force me to eat it. I would not be allowed to eat anything but that. Strawberry ice cream, for example. Exclusively eating something you already dislike when you are regularly denied food tends to enhance the gag reflex. So, often when memories of him invade my life, every food makes me gag. Even foods I typically enjoy and do not associate with the horror that was life with him.

These food issues make it difficult for me to be a good mom. Because I forget to cook dinner and then have to scramble to feed the kids. Or can't bring myself to eat with them. What kind of example does that set? I try, for their sake. Sometimes, I set an alarm so I will remember to prepare meals. Sometimes I sit with them and force the food down even though I think I am going to gag. And always, I remind myself to chew and swallow at a resonable pace. They don't even have a clue. And I like to keep it that way. For their sake.

Tonight I want nothing more than to eat something and go to bed. But I cannot bring myself to eat anything because I know it will make me vomit. And I cannot bring myself to go to bed because I know I will have nightmares.

Thankful Thursday

What am I thankful for today?

I am thankful for the opportunity to homeschool the girls. I am thankful that I was able to rearrange and completely organize the school area in our home. Things run more smoothly now. :)

I am thankful for the changes I see in both of my girls. FigNewTon is becoming such a beautiful young lady and Butterfly has a much more gentle spirit than before.

I am thankful for Dr.W and his tireless efforts to identify Butterfly's abilities and weaknesses. I am thankful that the process is closer to over and we should have answers in a few weeks. I am thankful for the progress that Butterfly is making. And although what Dr.W does is a good tool, I am thankful that God is bigger than this injury and He knows the plans He has for her. I am thankful for the encouragement received whenever I talk to Dr.D.

I am thankful we were able to visit the Cancer Survivors Park in our area yesterday and for what that meant to our family.

What are you thankful for today?

Happy Fall!

A Day To Remember

I came to the end of the day today and knew it had been a good day. These days don't happen often, but when they do, it is such a satisfying feeling.

FigNewTon made spaghetti sauce from fresh tomatoes. It was a bit runny, and I am not sure how to fix that, but it had the perfect flavor. There was enough left over to freeze so that we can enjoy it two more times.

While that simmered all day, the three of us worked on several projects. FigNewTon is sifting through school things to make her area more organized and make it easier to focus. Butterfly is working on a header for the homeschool newspaper. And I cleaned out two mammoth drawers, plus three normal size drawers. These dressers hold craft supplies, addresses, stationery, and what not. It was much more to organize than simply clothes. We are almost finished rearranging and organizing the hidden parts of our home; the closets, cabinets, and drawers. It is beginning to feel like we belong here, which is good, because I don't plan to move any time soon.

Then to end the day, I spent an hour with each girl one-on-one. Butterfly chose to play with paper dolls. I was able to share with her several memories that used to be hers, a bit about my childhood, and a few things that Grandma shared with me as well. She really enjoyed hearing the stories I told.

FigNewTon opted to play what has become known at our house as "The Game." It was one of those perfect birthday gifts. It only cost $6 and we have played it more times than I can recall. Her birthday wasn't even two weeks ago! "The Game" is Monopoly Deal. Simple as pie, although at first it seems a bit confusing. The directions promise that if you begin playing, you will understand, and it is true. It takes an average of nine minutes per hand, and it is way too much fun!

I will cherish this day for a long time.

Snapshot Saturday

April 22, 2007

FigNewTon participated in a skating competition. That makes for a very long day. This picture was taken mid-morning between events. She placed first in her first event and last in her second event. It is the last competition she did. She had to quit skating for a long time because that competition made her so sick. She slept for days and almost went into the hospital. Now that she is healthy, she plans to pick up competing again. We just need to get her a coach. She has been skating for about a year without one. There is only so far she can go on her own, though. I have told her to ask local businesses to sponsor her so she has a chance to reach her dream.

Following

Several of you asked me to add a followers button a few weeks ago. I had never thought to add one because it just didn't matter that much to me. I just did not understand the whole concept of following. I blame it on ADD. Seriously. Because when I go to my dashboard and see all that, it overwhelms me. That is what my blog list is for. If you want to know if I follow your blog, there are two ways to know.

1. Do I comment regularly? If the answer is yes, I probably read all of your posts and have since the first time I commented or before.
2. Is your blog on that list? I have that list set to sort by most recently updated so when a blog goes to the top of the list, I click on it and read it.

But I don't officially follow any blogs and will not add myself to your follower button. It confuses me. Just thought I should explain. :)

Oh, and if I read your blog, I pray for you daily. Just an added bonus. Hope that makes up for me not following anyone officially. :)

Updates

When I hurt my hand last week, the doctor was concerned that I had fractured a bone, but they couldn't tell because of the swelling. The swelling is mostly down now and they re-evaluated it today. Thankfully, it is not broken. It still feels it. This is because I have begun to develop CRPS in my hand. The good news is that we caught it before it has fully developed and with occupational therapy, it can quite possibly be prevented. Last year, when I broke my foot, I developed it in my foot. The doctor then explained to me that often with CRPS it is "use it or lose it." So, even on the days that my foot still hurts and swells like it is broken, I do not pamper it. Instead, I go outside and kick a soccer ball with the girls. Since I know my hand is not truly hurt, even though it hurts, I will do the same. I also wear a patch on my foot that significantly reduces the symptoms. There are no other medications that treat this condition that I would be willing to take because the risks outweigh the benefits. Please pray that my hand heals with the occupational therapy.

A few days ago, Butterfly remembered things and people from late 2003. She is still not quite where she was when I began blogging back in April and no where near where she was immediately before her last re-injury. But I do not measure things that way. I only measure gains as compared to her lowest point following her latest setback. Therefore, this is a gain of about 6-9 months in her memory as well as abilities. She thinks, acts, feels, and responds like an 8 1/2 year old. Just last week, it was more like 7 years and 11 months. There is so much more there to explain, but I am so overwhelmed that I am not sure how to put it into words. Except that this is hope in a concrete form. Her brain will get better. Her brain is getting better.

FigNewTon is also doing better. I don't often mention her struggles here, mostly out of respect for her. She is and always has been a very private person. But I am so proud of her growth. Last night, she asked me to tell her what I thought of her and I compared her to a diamond. A month ago, I would have called her a diamond in the rough. She is shining a brilliant hue now.

I am not sure I could ask for a better life. God is good to me on all counts. Each of us is making progress. Any forward movement is good and proof of the goodness and mercy of God.

Thankful Thursday

What am I thankful for today?

• Doctors - this time for me. I will give an update on my hand as soon as I have it which will probably be this evening. For now, it is still in a soft cast.
• Progress - for Butterfly. Again, I will give a more detailed description later, when I have two hands to type with. For now, just know there is progress.
• Reconnecting with an old friend.
• Rearranging furniture. I can't explain this one, so I won't even try.
• Examples that make a lesson understood like never before. In teaching the girls, in training the girls, and in my own heart.
• There's more, but my hand is hurting, so I will quit now. :)

What are you thankful for today?

It's

kinda
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this!

Snapshot Saturday

August 1, 2008

Butterfly took this picture. I wasn't even there. I was home with a broken foot. Autumn took my girls with her to a picnic.

Butterfly took this picture the day before her brain injury. The day before our lives changed forever. Once again.

Butterfly took this picture in the small window of time that I had two healthy children. When they got home, MM brought me a bandaid to put on my cast to make my foot feel better.

Posting this picture on a Snapshot Saturday breaks all of my rules. Plus, it has been posted before by me, linking back to where Autumn posted it on her blog. Oh well. It is the picture I wanted to post today. :-P

Clearly

A Friday that was really a Thursday followed by a Tuesday that is really a Friday and has already been a full day. Confused yet? Me too!

September 10th is always a Friday. To explain September 10th, 2004, I have to back up a few days, to September 3rd. FigNewTon went in for a well check up a few days early. She was a seemingly healthy almost 8 year old. She had, however, been complaining of headaches. So I mentioned that to the nurse who did not think to mention it to Dr.D. No matter. When he checked her eyes, he didn't like what he saw and scheduled her for a CTscan. The scan was that next Tuesday. She had her birthday on Thursday and had invited several girls over to spend the night on Friday. As I was driving home from work, my cell phone rang. It was Dr.D. He had received the results of the brain scan and had scheduled an appointment with a neurosurgeon on Monday. I was driving home from work, preparing to greet a half a dozen little girls into my home, and I was in shock. There was something in my baby's brain! September 10th is always a Friday.

Yesterday, Thursday, September 10th, Dr.R, the neurologist, and Dr.D, the pediatrician both saw FigNewTon. Dr.R said she doesn't need to see her again unless something goes wrong. Dr.D said she is a remarkably healthy young lady. I can handle that kind of news. It signals the end of the final chapter of a very long five years. It seems fitting that I got good news exactly five years after first getting the bad news.

September 11th is always a Tuesday. Am I the only one that has had to remind myself what day of the week it is on September 11th for the last 8 years? Like most Americans, I know where I was, what I was doing, and what I thought. I was in the car driving FigNewTon to the doctor because she had impetigo and needed to be treated before returning to school. The reports of what was happening came on the radio and I thought they were playing a really bad radio drama like the one that caused wide-spread panic about an alien attack when my Grandma was young. I could not believe it was real. Then we got to the doctor's office and everyone was gathered around the television with horror-stricken faces. All of a sudden, seeing it in full color on the TV and seeing all those people, I knew it was real. September 11th is always a Tuesday in my mind.

Now, onto today's already full day. Butterfly woke up with a headache worse than any headache she remembers. We went to see Dr.D and he checked her over. She is improving slightly in her ability to perform the neurological exam, and he saw nothing concerning when he looked into her eyes. He will probably schedule an MRI soon. He hinted at that. It has been over a year since her initial injury and she is still not better. A second MRI would not be uncalled for. But not today, because I am confident in his abilities as a doctor. I am confident that if he does not see anything concerning in her exam, that there is no reason to be concerned. He had to figure out the best medicine to give her for her "worst headache ever." Most medicines that would be used to treat a really bad headache or a migraine could be harmful to Butterfly. To the best of my understanding, the blood vessels in the brain contract when you have a migraine. Most migraine medicines cause those blood vessels to expand. In Butterfly's brain, because of the injury, there is a good possibility that the blood vessels are already slightly expanded. Those medicines would do more harm than good. So, he gave her an antihistamine with pain relieving properties. She is sleeping. Hopefully it works.

I had a Friday that was really a Thursday followed by a Tuesday that is really a Friday and has already been a full day. Clear as mud? Good. That's about as clear as it is for me, too.

Thankful Thursday

This is late because I forgot it was Thursday. More about that in my next post, either later today, after the girls go to bed, or sometime tomorrow.

What am I thankful for today?

• Doctors. This seems to be a recurring theme in our life, but that is OK. I am thankful for doctors.


• Music. Depending on the situation and the song, it can be encouraging, calming, faith building, whatever.


• Quiet. Rest. Peacefulness.


• Birthdays. They are a nice time to reflect on God's miracles. Sometimes I forget to do that.


• Friends. Both here in blog world; people who leave encouraging comments, pray for us, or give little gifts like a new blog header and those that I know in life outside of this computer who are there to chat when I feel alone, give guidance when I am unsure, or pick up the slack when life gets overwhelming.

What are you thankful for today?

My Header

Krissy, over at Thinking of Blue, surprised me today with this new header! Isn't it cute? When you stop by her blog, leave a message letting her know what you think of it!

Happy Birthday FigNewTon!

OK. So I may have gotten a little carried away with pictures of my precious birthday girl, but really can you blame me? I tried to make a slide show and couldn't get it to work. So these are all the pics I picked out for that. She is 13 today!! I can't believe it for several reasons. One, my baby is a teenager! And two, we never thought she would live to see this day. God is amazing! She is healthy and strong, spirited and loving; everything a teenage girl should be. I am so proud of her, who she is, what she has been through, and who she is becoming. I thank God for her life every day.

Moving Forward

If you check our homeschool blog, you know that Butterfly has been carrying Flat Stanley around for about a week and a half. This initially made me quite sad because she is not supposed to be interested in Flat Stanley. The book and adventures are geared toward seven year old children. But she is interested and I just let her do her thing. I even took what she was interested in and came up with learning activities to tie into it and teach her where she is at. Well, last night, Flat Stanley was "playing" Monopoly with us and she said, "This is kind of silly. Flat Stanley is not real." Yippee! She is maturing slightly. She is still enjoying carting him around, as evidenced by this, but it is progress. And to be honest, it is the first progress I have seen since her latest setback. I am thanking God for this baby step. Any forward movement is good. : )

Snapshot Saturday

July 2005

Between this and this, we went to the Babyland General Hospital. It is way too much fun. In this shot, the girls are watching a cabbage patch doll be born. It is hilarious. The attendant takes you through the whole birthing process. There is "imagicillin" and all sorts of other parallels to real life, but sterilized and made funny. Then, the crowd is given the opportunity to name the baby. The girls were having so much fun.

Thankful Thursday

What am I thankful for today?

Antibiotics, Bible, Children, Dreams, Encouragement, Faith, God, Home, Ice skating, Joy, Kites, Love, Mail, Newspapers, Obedience, Prayer, Quilts, Raincoats, Scholarships, Tea, Understanding, Victory, Wind, eXcellence, Yogurt, Zucchini

What are you thankful for today?