Megan's height and weight on 1/1/14: 36 3/6 inches tall and 26.1 pounds
So much has happened with Megan since my last blog post. She has been put on and taken off of several medications to help her sleep which did not work. She was admitted to the hospital for a 24 hour EEG and lumbar puncture for lab tests. She was put on a new medication that made her go crazy and then everything changed. We had been researching, for months, things to help Megan. We looked up everything we could regarding her sleeping issues and how we could help. And then Will found it.
I asked Will to research insomnia and to include the fact that the medications weren't helping as a symptom and that finally brought up a diet. The Feingold diet was developed for ADD/ADHD kids but works for several other issues. There was a testimonial on the main page about a little boy whose issues/symptoms fit Megan to a T. We started the diet as much as possible the next day and haven't looked back.
Megan is thriving. She is sleeping (which of course was the original goal) but she is also excelling in other areas. We expected her exhaustion symptoms to disappear but so much more has happened. Megan now has a much, much longer attention span. She will continue working on something instead of becoming frustrated. Even if she gets to the point of frustration she is quickly over it and back to trying. Previously she would throw what frustrated her and definitely not go back to the same thing. She is compliant and obedient. She will do what is asked of her, including making eye contact on request. She is happy and gentle and loving. She is interacting and playing with Sam, not just a little bit but all the time. She is following instructions and progressing. She is so much more verbal, she is trying to say lots of different words and not just when we ask her to, sometimes she just points and says something. Last night she pointed at her bible and said bible. It was awesome.
The diet is a work in progress as we are still figuring out what triggers Megan and what is okay. She seems to be really sensitive to some things so we are working on what's okay for her specifically.
Tuesday, February 11, 2014
Friday, December 13, 2013
Behaviors
Megan developed several "bad" behaviors when her sleep deprivation started. Though she is still not back to a regular sleep schedule, she has been getting more and more sleep. With the additional sleep I have noticed that some of her behaviors have started disappearing, or at least becoming much less frequent. Unfortunately some of them have morphed into habits that we are working to "unlearn".
Behavior Status:
Behavior Status:
- Pulling her hair out. This one is one of the ones that has morphed into an unwelcome habit. The behavior started in her bed when she wanted to sleep but couldn't. The nights that this happens have decreased, but it still occurs when she is really upset. The habit part of this is that anytime the status quo changes it is her go to coping technique. If she is frustrated, upset, nervous or even extremely happy she will grab her hair right behind her ears and yank on it.
- Biting others. During the height of her sleep deprivation Megan was biting everything and everyone for no apparent reason. Obviously the reason was she was exhausted and frustrated that she can't sleep. She would bite Sam just for the heck of it. Thankfully the more sleep she gets the less we see this one. Instead of her biting someone 10-15 times a morning she has gone 3 days without biting at all.
- Biting herself. This one is generally done when she is frustrated about not getting her way, or not being able to do something she is trying to do. This is another one that has changed into a habit as well. I have seen it a lot less the past week as she has gotten more sleep
Wednesday, December 11, 2013
Changes
Megan has been changing over the past few weeks, especially in the last 7-10 days. Not only has she said a few words but she is trying to talk quite often. She tries and tries to say words, she points at things and struggles to find the right sounds for them. She will have me tell her what something is over and over again as she tries to imitate me.
She has always used our hands to do things or pointed at things and grunted for them but she is now walking over, asking for something, walking back to us, grabbing our hand and taking us to the item and talking to us about it some more.
Today when I was playing with the kids I asked Sam if he was my little buddy, mommy's little boy and he said "yes, yes, yes" and giggled. A few minutes later I asked Megan if she was my little miss, mommy's little girl and she emphatically shook her head yes, clapped her hands and smiled a huge smile.
She will audibly tell Sam more when she wants him to do something again, like turn on a toy or play chase with her.
She is engaged, she is responsive and she is initiating conversations. She is doing great at school. She has started interacting/play with the other kids. Her and another little girl in her class pretended legos were hats last week and were putting them on each other's heads and then giggling about it.
She has always used our hands to do things or pointed at things and grunted for them but she is now walking over, asking for something, walking back to us, grabbing our hand and taking us to the item and talking to us about it some more.
Today when I was playing with the kids I asked Sam if he was my little buddy, mommy's little boy and he said "yes, yes, yes" and giggled. A few minutes later I asked Megan if she was my little miss, mommy's little girl and she emphatically shook her head yes, clapped her hands and smiled a huge smile.
She will audibly tell Sam more when she wants him to do something again, like turn on a toy or play chase with her.
She is engaged, she is responsive and she is initiating conversations. She is doing great at school. She has started interacting/play with the other kids. Her and another little girl in her class pretended legos were hats last week and were putting them on each other's heads and then giggling about it.
Sunday, December 8, 2013
Talking, sleep and starting to run
A couple of weekends ago Uncle Mike was at the house and Megan tried very hard to say his name. She said "m, m, m, mi, mi, mi" very excitedly. It was a wonderful moment because she was trying to talk. Well, since then she has really taken off. She said "dada", "up", "on", "ip (ipad)" and "hat". Every single one of those words were thrilling to hear, but hat was by far the best because she had never made an "h" sound before.
All of this talking started after she got 4 uninterrupted nights of sleep in a row, followed by every other night for a couple of days. We have been doing everything we can to help her sleep and this just proves how very important it is for her development. She has started on a new medication that will hopefully help her to sleep through the night so that her internal clock can reset. It worked the first night, but did not work last night.
Megan got new orthotics last week. These are actually the same ones she had previously, just bigger. She is doing amazing with them. Her gait has narrowed and she is so much more stable. She has started really moving and is almost at a run a lot of the time.
All of this talking started after she got 4 uninterrupted nights of sleep in a row, followed by every other night for a couple of days. We have been doing everything we can to help her sleep and this just proves how very important it is for her development. She has started on a new medication that will hopefully help her to sleep through the night so that her internal clock can reset. It worked the first night, but did not work last night.
Megan got new orthotics last week. These are actually the same ones she had previously, just bigger. She is doing amazing with them. Her gait has narrowed and she is so much more stable. She has started really moving and is almost at a run a lot of the time.
Friday, November 8, 2013
New Neurologist and new skills
Megan had her first appointment with her new Neurologist yesterday. He is wonderful and was wonderful with Megan. His first plan of action is to get Megan sleeping again. It has been 9 months since Megan's sleeping issues started and he is going to help her get back to sleeping. I am very excited about this - excited that he is trying something new for her right now and if this doesn't work he will try something else until she is better.
Megan has several new skills. She is able to stand still for 10-15 seconds at a time. She can walk sideways and backwards as well. All three of these items were next on the agenda for her PT in NC. Today while walking around Megan bent down and pushed a ball and then followed it and repeated the behavior several times. She was doing this with a large ball so she only had to bend down part of the way but she was showing great control and balance.
Megan has several new skills. She is able to stand still for 10-15 seconds at a time. She can walk sideways and backwards as well. All three of these items were next on the agenda for her PT in NC. Today while walking around Megan bent down and pushed a ball and then followed it and repeated the behavior several times. She was doing this with a large ball so she only had to bend down part of the way but she was showing great control and balance.
Monday, November 4, 2013
Following directions
Megan started really following directions several months ago. If we asked her to bring something to us or to not/stop touching something she would stop, etc. Today she followed directions given to her by her toys.
This morning she was standing up, holding onto the sit-n-spin trying to get on it when she pushed the button and it said "Elmo says SPIN" and Megan got a look on her face, stood back up and turned in a circle. She then got on the sit-n-spin and started playing.
Tonight she was playing with a toy that said "Can I have a hug please?" and she would squeeze it as tight as she could each time it asked.
This morning she was standing up, holding onto the sit-n-spin trying to get on it when she pushed the button and it said "Elmo says SPIN" and Megan got a look on her face, stood back up and turned in a circle. She then got on the sit-n-spin and started playing.
Tonight she was playing with a toy that said "Can I have a hug please?" and she would squeeze it as tight as she could each time it asked.
Friday, November 1, 2013
Walking up the driveway and progress report
Yesterday morning after school the kids and I were playing in the front yard. I was holding Megan's hand while she walked down the driveway because it is a pretty steep incline. When it was time to walk back up she let go of my hand and took off by herself. She walked all the way to the front door by herself. I was so impressed.
I received Megan's 9 week progress report today. To say that things are different from her previous school would be an understatement. All of the goals listed below have a target completion of the end of school, however as she masters them new ones will be created. There are a couple of goals that she hasn't started yet so I am not including them since there hasn't been any progress. Below is a run-down of her progress.
- Follow 2-step directions with 80% accuracy: 50% Megan is able to follow familiar two step directions (pick up the napkin and wipe your face) but she struggles with unfamiliar two step directions (touch your head then touch your toes).
- When provided with cues and prompts Megan will use verbalizations, signs and/or pictures to request activities with 80% accuracy: 10% with maximum cues and prompts (they just started introducing pictures)
Three of the next four Megan does at home all the time so it is a little frustrating that she is still not doing them at school, but at least she is starting to do them.
- When given a hand rail and close adult stand-by assist Megan will ambulate up 3 steps with a non-alternating pattern with 80% accuracy: 42%.
- When given a hand rail and close adult stand-by assist Megan will ambulate down 3 steps with a non-alternating pattern with 80% accuracy: 15%
- When given access to the preschool setting and adult supervision and no more than 2 verbal cues Megan will independently ambulate to transition from one learning center to another with 80% accuracy: 35%
-When given access to the preschool playground and close adult supervision Megan will independently ambulate up and down the crossing bridge with 80% accuracy: 40%
- String a minimum of 4 beads on a dowel rod or pipe cleaner decreasing in size as tolerated with 70% accuracy: Megan is able to place large beads on a dowel rod when given assistance for object orientation and occasional physical prompts. Progress is at 25%
- Complete a 4-5 piece inset puzzle with 70% accuracy: Megan is able to complete simple shape inset puzzles with large knobs when given prompting for choice limiting and visual cues. Progress is at 25%
- Stack a minimum of 4 items decreasing in size as tolerated with 70% accuracy: Megan is consistently able to stack large blocks on the floor when given a demonstration. She requires physical assistance to stack cups or smaller items at this time. Progress is at 25%
- Imitate vertical and horizontal pre-writing strokes with 70% accuracy: Megan has made great gains with this skill. She is able to imitate lines after a hand over hand demonstration and assistance to initially position her hand. Vertical: 30% Horizontal: 30%
- Squeeze scissors to snip paper with 70% accuracy: Megan is currently in the teaching phase of this skill. We are working on squeezing items to improve hand strength and increasing tolerance for hand over hand assistance. Progress is at 10%
I received Megan's 9 week progress report today. To say that things are different from her previous school would be an understatement. All of the goals listed below have a target completion of the end of school, however as she masters them new ones will be created. There are a couple of goals that she hasn't started yet so I am not including them since there hasn't been any progress. Below is a run-down of her progress.
- Follow 2-step directions with 80% accuracy: 50% Megan is able to follow familiar two step directions (pick up the napkin and wipe your face) but she struggles with unfamiliar two step directions (touch your head then touch your toes).
- When provided with cues and prompts Megan will use verbalizations, signs and/or pictures to request activities with 80% accuracy: 10% with maximum cues and prompts (they just started introducing pictures)
Three of the next four Megan does at home all the time so it is a little frustrating that she is still not doing them at school, but at least she is starting to do them.
- When given a hand rail and close adult stand-by assist Megan will ambulate up 3 steps with a non-alternating pattern with 80% accuracy: 42%.
- When given a hand rail and close adult stand-by assist Megan will ambulate down 3 steps with a non-alternating pattern with 80% accuracy: 15%
- When given access to the preschool setting and adult supervision and no more than 2 verbal cues Megan will independently ambulate to transition from one learning center to another with 80% accuracy: 35%
-When given access to the preschool playground and close adult supervision Megan will independently ambulate up and down the crossing bridge with 80% accuracy: 40%
- String a minimum of 4 beads on a dowel rod or pipe cleaner decreasing in size as tolerated with 70% accuracy: Megan is able to place large beads on a dowel rod when given assistance for object orientation and occasional physical prompts. Progress is at 25%
- Complete a 4-5 piece inset puzzle with 70% accuracy: Megan is able to complete simple shape inset puzzles with large knobs when given prompting for choice limiting and visual cues. Progress is at 25%
- Stack a minimum of 4 items decreasing in size as tolerated with 70% accuracy: Megan is consistently able to stack large blocks on the floor when given a demonstration. She requires physical assistance to stack cups or smaller items at this time. Progress is at 25%
- Imitate vertical and horizontal pre-writing strokes with 70% accuracy: Megan has made great gains with this skill. She is able to imitate lines after a hand over hand demonstration and assistance to initially position her hand. Vertical: 30% Horizontal: 30%
- Squeeze scissors to snip paper with 70% accuracy: Megan is currently in the teaching phase of this skill. We are working on squeezing items to improve hand strength and increasing tolerance for hand over hand assistance. Progress is at 10%
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