Car ride troubles getting a little bit better

Since January 2nd when Megan was in the hospital she has not wanted to be in the car.  She wants to go places and is so happy to get there but the journey is horrible.  It is so stressful for me and for her and we are trying to figure out what is going on.

One of the "things" Megan reacts to is benzene and it exists in the materials in the car and so maybe it is causing headaches for her and so she doesn't want to get into the car.  We are thinking that since we have been able to pull it out of the rest of her life that what is in the car seems that much stronger.

So for now I am putting the windows down and venting the car for a few minutes, when possible, before she gets in.  Hopefully if we can show her that it won't hurt her anymore she will stop resisting car rides.

Watching where she is going

Megan is doing great following instructions.  Yesterday she was excited about something that was on the TV and she headed straight for it.  There was a plastic DVD box and lid between her and the TV and I said "Megan, watch where you are going" and she stopped walking, looked down and then side stepped around the box.

More spoon work and floor dominoes

Megan did great again today eating by herself with a spoon.  She ate all of her refried beans and even a few bites of her macaroni and cheese.

Yesterday I brought the box of floor dominoes down from the upstairs game room for the kids.  Megan played with them for quite some time today.  She had to be dragged away from them for her bath.  She is doing a great job putting them in their box.  The dominoes are cardboard and are about 2" by 4".  She works with them to put them into the box correctly which requires her to turn them, twist them, etc.  She just keeps working on them until she gets them to fit, never once getting frustrated.  Once she got them all in the box she would dump them out and start over.

Eating with a spoon!

Megan has been feeding herself breakfast for some time now; however, she does it with one of us holding onto the end of the spoon and her doing all of the work.  The reason for this is that she had always thrown the spoon.  She would take a bite and then throw the spoon and no matter how many times we told her not to do that it wouldn't change.  After each bite the spoon would go flying, so we stopped letting her hold it by herself.

Tonight I decided to give it a whirl again, after all so many things have changed with the new diet.  VICTORY!  Megan fed herself a bowl of beans (she ate 12-15 bites) without throwing her spoon.  She did attempt to throw it initially and I told her to put it back in the bowl or hold onto it and she did great.  She started out using her left hand and ate most of it and then switched hands for a few bites.  She did drop the spoon over the edge and onto the floor when she was finished; but huge progress tonight.

Exploring and amazing difference with new diet

On Monday I took the kids to a strip mall.  Megan walked from the car to the shopping carts of the first store and then walked along the sidewalk past another store to the pet store.  I walked both kids into the pet store and we walked around looking at the animals.  She wasn't impressed with the cats (thank goodness, I don't like cats) but she liked the fish.  We looked at several tanks that had just a few fish in them and then got to the goldfish tanks which were full of fish.  She looked at them for a little bit and then went to the next tanks and then went right back to the goldfish.  She did amazing walking around the store, she didn't try to pull things off of the shelf and just really enjoyed getting to walk around.

When we left the pet store we went into the store we had previously walked past.  We ended up walking in and just walking back out after a few seconds due to the smells in the store.  She had so much fun walking around everywhere that she didn't want to get back in the car to leave.

Yesterday when I picked Megan up from school she seemed "off" to me.  She had been fighting a runny nose since Saturday morning but otherwise she has been doing great.  Her eyes were glazed over and she kept banging her head in her carseat even when she was otherwise happy.  (we are still having carseat issues).  When we got home she wouldn't even take a bite of her lunch so I put her in bed thinking that her runny nose was wearing her out.  She slammed her head a few times in bed (not something she has done in a while) and then was asleep in a few minutes.  After nap she was acting a lot better and even ate her lunch.  She was playing well but when she was by herself, or with Sam, she was throwing toys more often than not - which is something else she hasn't done in weeks.

I noticed that her left eye had a slight discharge from it, but it was fine otherwise and it didn't seem to be bothering her; but my gut told me to get her looked at.  Will took her to the doctor as soon as he got home and she has an URI, ear infection and conjunctivitis.  And man her eye looked 50 times worse by the time he got home with her an hour and a half later.  What's amazing (and sad) is that the doctor said her ear infection was pretty bad so it had been there for a few days and the only way it showed was her banging her head in her carseat and then again at nap yesterday.  She is doing so much better with the new diet that even a bad ear infection didn't affect her behavior.

Unfortunately there are not medication options to treat her current issues that are dye and flavor free.  We are praying for the meds to only help her and for her to be protected from any negative side effects from the dyes and flavorings.

iPad progress and waving hi/bye

Megan did really well yesterday when playing apps on the iPad.  She was able to complete some sorting games completely by herself.  She didn't get items right the first time every time but she would try again in a different spot until she figured out where they went.

Megan has been waving hi/bye for a couple of years but usually only when you touch her elbow first.  I think one of her therapist used that touch as a sign to tell her to wave and it just kindof stuck.  Well a few weeks ago she started just waving without having to be touched first.  She waved goodbye to granny the other day with both hands and then was waving hi to me a lot yesterday.  This morning when I dropped her off at school she saw her teacher a few feet away and she waved to her.  Her teacher was very touched.

Megan slept through the night last night, coughing herself awake a few times but going right back to sleep.

Evaluation results

Yesterday I received the results from Megan's recent evaluation.  I don't agree with their findings, but I never do.  They have Megan's adjusted age (based on what she can do/understand) at 18 months up to 24 months on some skills.

I don't disagree with the age range when it comes to her speech, she is just starting to say word sounds.

I don't disagree with the age range when it comes to her gross motor skills because she is walking but isn't quite stable or balanced enough yet to stand still "forever", she can stand for 20-30 seconds but then needs to take a step.  She isn't able to climb up and down stairs by herself, or jump or hop or skip.  All things that lower her adjusted age.

I do, however, disagree with their cognitive findings being in this range.  When I ask for examples I am told that when they ask/tell her to do something that she doesn't do it until they model the behavior.  For example, they tell her to get on the swing during PT.  Her PT said she makes the request, waits 3 seconds, makes the request again and then after 3 seconds she models the behavior by walking to the swing.  I have explained to everyone involved that Megan needs about 8 seconds to respond.  Ugh!

I will be attending Megan's ARD meeting on Wednesday to review the evaluation and discuss our next steps.

On a happy note: Megan continues to do very well.  She is struggling with allergies again because of the drastic weather changes this week; but she is working hard to control herself.  We have had some very pleasant wagon rides and trips to the playground.

Dancing

Yesterday after school I had Megan in my lap and I was telling her how great she has been doing.  I told her I was proud of her for controlling herself and she leaned forward and gave me kisses.  She may not be fully talking yet but she knows how to get her point across.

After nap we were sitting in the floor singing songs.  I started singing 5 Little Monkeys and she stood up and started dancing around.  She sat back down about halfway through the song and then had to get back up again when I got to the Hokey Pokey.  She loves to dance so much and it is always fun to watch.

Rough night and good morning

Megan was awake for 3 hours last night and wasn't happy about it.  We aren't positive what caused it but we have 2 options - one being a delayed reaction to the dairy she ate but we really think it is a build up of benz in her system since she got progressively worse.  We will be avoiding benz today (lotion, soap) to see if things go back in the right direction tonight.

During drop off this morning her assistant teacher was the one who helped her walk into the school.  I told her that Megan had a rough night and that we thought we knew what caused it and would be avoiding it today.  Her response "oh man and she has been doing so amazing lately".  :-)  Hopefully she will still have a good day today, despite her being a little tired.

Back to blogging

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.