Sleep, good and the miracle of finding the glasses

Megan slept through the night last night, or she was extremely quiet when she was awake.  She did get her first "good" from school in 3 weeks and she was a little aggressive with me after school.  She didn't nap today but still did well in speech so hard to tell.

On Monday Megan slept through her speech session.  So after nap was over I was going to run an errand with the kids.  When I took Megan to the car I had her glasses in my hand.  I decided to check the mail and I put the glasses on the trunk and of course forgot about them and put Megan in her car seat after the mail check.

I backed out of the driveway, drove out of the neighborhood, and drove for about 3 miles when it occurred to me what I had done.  I pulled the car over and checked and they were gone.  I started praying and headed back home.  When I pulled into our neighborhood I saw them in the street.  They were only very slightly damaged.  It is difficult to imagine that it occurred when the came off of the car, but I can't imagine that someone ran over them and that was all that happened to them.  Either way I was so very thankful that her $333 glasses were okay and we weren't going to have to purchase our third pair in 30 days.

Sleep update

Megan was awake again on Sunday night but she slept in and had enough cumulative sleep to have a great morning.  She even took a nap, though she slept 10 minutes too long and had to miss her speech appointment.  I had to change her diaper during nap yesterday before she would fall asleep.  As I was getting her dressed I told her nap time wasn't over and she still needed to get some sleep.  She shook her head no and said "no no no no no no no".  This is only the second time that I can remember her saying the word no.

She is still in her arm bands since when she was awake on Sunday night she was unhappy.  I told her last night as I put them on her that she needed to sleep through the night or not be upset if she woke up and I wouldn't put the arm bands on her the next time.  Well, she woke up very briefly last night, and basically slept through the night and woke up happy this morning; so no arm bands during nap today.  

Developmental Pediatrician appointment and results

I decided a couple of months ago that I wanted to get Megan in to see a Developmental Pediatrician.  She has never seen one and I thought that they might be able to help with getting her more services/therapies and help her get into an appropriate special needs school.  

I had to fill out an extensive application and include ALL of Megan's school and medical records.  I ended up including all of her school files and just her NC medical files since I already had them on hand.  I provided them with permission to obtain her TX records if they needed them.  Her application was about 4 inches thick so Will dropped it off at their building.  

We were informed that it would take 4-6 weeks for them to review her application and determine if she was a candidate for an appointment and then it would take 6 months for her to be seen.  8 days after delivering the file we received a letter in the mail informing us that Megan had been scheduled for an appointment, which was 3 weeks away.  

Thursday was the day of her appointment.  She hadn't slept in days and got the least amount of sleep on Wednesday night so I wasn't looking forward to how it would go at the office.  I wasn't sure what would happen at the appointment, the letter said it would be a 2-hour appointment at least and that no siblings were allowed to attend.  

After being checked in by the nurse, and answering a lot of questions they already had the answer to, we were put in a room to wait for about 15 minutes.  When the doctor was ready we were moved to the evaluation room.  It was about 8x8 in size and had an exam table, a bookshelf full of toys, a kids table and chair and a couple of other chairs/cabinets.  Megan checked out the room and the toys and then started pulling everything off of the shelves.  I was working really hard to try to contain her and chat with the doctor.  Another thing that happens when Megan is tired is she is in non-stop movement mode.  

The evaluation ended up being me answering a ton of questions about Megan's abilities and behaviors and the doctor observing Megan playing while we were talking.  After a good long time she had the information she needed and she examined Megan, much like a doctor's visit.  

I have had to answer a lot of questions about Megan's abilities over the years.  It happens with every new doctor, therapist, evaluation, etc.  There are people who are good about these discussions and people who really should get a different job (those people always leave me in a puddle of tears).  This was by far the best discussion I have had.  Because it was an extensive evaluation there were questions or wording being used that made me think about things I hadn't before.  Some of it was difficult to admit to myself but it was a good picture of things.  Will and I view Megan for what she can do and how far she has come and how much she is learning on a daily basis; and I am constantly being confronted with what she can't do in these types of appointments.  I was okay when the appointment was over, but did struggle with some of it later in the day.

Okay...so for the diagnosis and path forward.  

Megan has an appointment with a Geneticist in September.  The doctor said that the shape of Megan's ears was slightly off and that it could be indicative of something.  She had the entry level genetic testing done during the hospital stay in January and they were all normal; if that hadn't already been done it would have been the first step instead of the appointment.

Megan now has a secondary diagnosis of Autism.  The doctor said she exhibits several autistic type behaviors: no extended eye contact, not playing with toys appropriately/as intended, putting things in and taking them out, not being excited/interested in showing us new cool things, not sitting still for long/constantly changing toys or tasks.  Most of these behaviors went away or improved significantly with her diet change and subsequent sleep and returned this week when she stopped sleeping again.  

Something I have been saying and saying and saying in her school meetings is that the issues Megan is having are behavior related and not ability related.  The school hasn't been getting it and things just keep progressing on a path that I haven't felt was right for Megan.  I did a ton of research and felt like the right thing for Megan was ABA therapy which is completely behavior based.  When I talked to my insurance company about it they said that it was covered but only for certain diagnosis codes.  ABA therapy is an Autism treatment so I knew that was going to be the code that would be approved and since we have never felt like Megan had Autism I wrote off that option of treatment for her and started trying to figure something else out for her for next year.  

Well, now that she has a diagnosis she can get the therapy.  I was completely unprepared for a new diagnosis, especially Autism.  I was expecting help getting Megan into the special needs school, which she isn't ready for either but was a better option.  

I have no way of knowing if the doctor would have seen enough to make the diagnosis if Megan had been sleeping and had things more under control.  Maybe there would still have been enough, maybe not.  She did say that if I was concerned about the diagnosis she could send her to the psychologist for a complete evaluation specifically for Autism but that she was comfortable making the call with the information that she had.  She did say that if in a couple/few years we no long felt that the diagnosis fit we could have her reevaluated and it was possible that things would be different at that time.  

Ups and downs and Frozen

Megan continued to get greats at school each day she was there.  She had to miss a day for an appointment and then the next day she slept in and since it was early release it didn't make sense to take her.   The reason she slept in is because for the past 7 nights she hadn't slept.  Megan had stopped sleeping again, meaning she was awake at night for at least 3 hours (most of the time closer to 5 hours).  Thankfully for the first few nights she slept late so that she still got a decent amount of cumulative sleep, and therefore she was still functioning well.

Wednesday night she was awake for 5 hours and then she didn't sleep in so she was awake early on Thursday morning resulting in less than 5 hours total sleep for the night.  After several days in a row of broken sleep this was too much for her to handle.  On Thursday we started seeing all of Megan's old behaviors surfacing again.  She was extremely clingy, wouldn't be separated from me, started biting herself with every frustration, pulling her hair and ears again both in and out of bed and just generally acting like she didn't feel well.  We had already been trying to figure out what happened in her diet to cause this type of sleep issues again and were removing all new items.  During this same 7 days she had also stopped napping so she wasn't catching up on sleep during the day either.  Because of the old behavior we had to put Megan back in the arm bands, which she wasn't thrilled about.

Thursday night brought more of the same, she woke up and was up for a few hours and Friday was a rough day for her.  The behaviors continued to worsen.  Friday night she was up again which made Saturday another rough day.  It was as if we lost our daughter again.  We continued to limit her foods to the few items we KNOW don't cause any issues and just kept praying that it was just a build-up reaction from the several items we identified and that we just had to wait it out.  Last night Megan woke up again but this time she was only awake for 20 minutes off/on as she worked on going back to sleep.  She did wake up very early, 4:30am, but she had gotten more than 8 hours of sleep by then.  This morning our little girl was back to her happy, happy self.  No more biting or fits or ear pulling, etc.

Megan has never been fond of tunnels, etc.  She likes for Sam to go in them but she just doesn't quite make it in herself.  She has successfully crawled through our tunnel a couple of times but they were extremely coerced attempts.  Sam has been playing behind our couch and the other day Megan decided to follow him.  She did great and made it all the way out the other side.

Megan is not the best at cleaning up.  We work with her but she usually empties things right back out.  The other day she emptied most of the book basket looking for a specific book and then she brought me the book, looked over her shoulder at the mess and turned around and put all of the books back in the basket.  It was such a joy to watch her realize she had made the mess and then clean it up on her own without prompting.

Megan loves music, always has.  She has never been a big fan of tv but I decided to give something new a try.  I put in the Frozen DVD and turned on the music video.  She walked up to the tv and stood there dancing for the entire song.  We replayed it numerous times and she dances to it every time.  I then played the original promo and something amazing happened....she laughed appropriately.  She got the humor and laughed at it.  She so has my sense of humor and it was truly wonderful to see her enjoying something like that.

Speech

Yesterday during speech Megan did amazing with a speech app on the ipad.  We have tried at home and she just wants to play on the ipad so they used two ipads; one for her to communicate with and one for her to play on.  She purposefully and repeatedly used "more", "play" and "go".  They are going to test out a couple of different applications with her to see which one works best for her and then we will start implementing it with Megan at home.

I am super excited for her to be able to expand her vocabulary beyond the few signs that she knows and will do right now.

She was also verbalizing more a ton during the session.  When we were getting into the car to go to speech Megan said "light" (no l though).  Sam was already in the car getting buckled in and I was carrying Megan around the back of the car when she said it so he couldn't see her at all.  He yelled from inside the car "Megan said LIGHT mommy" it was that clear that he understood her too.

Egg hunts & Easter

Megan did so great at the egg hunts this year.  She did well at the city hunt we went to, but didn't get very many (4) eggs since the other kids were running around and she was slower; but she did great picking them up and putting them in her bucket.

On Saturday morning she loved doing the egg hunt with Sam.   She did great walking around and picking up the eggs and she was so happy.  She was smiling and clapping and jumping the entire time.  After the hunt we sat down inside and she discovered that Uncle Mike and Aunt Elaine's egg hunt meant that there were snacks in the eggs.  We have always hidden empty eggs so this was a big deal.  When I opened the first one she immediately grabbed the graham bunnies and ate them.  She then ate one of the cheddar bunnies but didn't eat anything else until she saw the vanilla animal cookies - those she gobbled up.

Then I opened the egg that held the chocolate bunny.  It was wrapped in foil so she didn't know what it was.  I unwrapped it and told her to take a bite - she was a little hesitant at first but as soon as she got a taste it was on.  She wrapped her arm around mine so that I couldn't get the bunny away from her mouth and she ate it all.  She was so happy she was doing her little dance the entire time.

When it was time for the afternoon hunt Megan wasn't that into it.  Just like Sam she wanted to see what was in the eggs when she picked them up and then she just wasn't interested in picking up more than just a few.  At that point she just wanted to sit down and play with her eggs, so we let her.

This morning she got her Easter basket.  In it we included some plastic jumping frogs and carrot bomb things.  Will showed her how to make the frogs jump once and she had it down.  She was having so much fun jumping the frogs around.  She also loved it when I threw the carrots at her and daddy.

Wow, What a week (more like two weeks, this post is overdue)

Something clicked for Megan about 2 weeks ago.  So much awesome/fun stuff has happened that I am just going to bullet point it for the record.

• No longer sleeping with arm bands.  We took them off of her about 10 days ago.  She has even been unhappy since having them removed and has not once gone for her hair or ears.  She did reach up twice on the second day and controlled herself though and didn't touch them.  She isn't grabbing them when she is unhappy outside of bed anymore either.
• She is doing amazing controlling herself.  She is stopping herself from getting upset and also able to stop a fit immediately upon being told to do so.  
• Car rides are back to normal.  She progressed to being okay if she was a little hungry and had "cheerios" and then had some music or singing going on.  We have even taken car rides just for the sake of going for a drive and she did great.  Starting yesterday she has been fine with just being in the car, no props needed.  
• She has been doing great in speech therapy and now does the signs for "help" and "my turn".  She is doing "my turn" really well and loves that she gets the toy when she does it.  She will even happily give me whatever she has if I tell her it is my turn.  
• For whatever reason Megan has had a few days in a row where she didn't nap.  On one of those days I went in her room to change her diaper about halfway through naptime and she pointed at her door and clearly said "out".  Man I wanted to reward her and take her out so bad.  I praised her for saying it and told her she needed some more rest.  
• She is stacking blocks like crazy.  She is regularly stacking her blocks on her own.  Last weekend I found some really large plastic stacking shapes and she is doing great stacking those and is being so patient with them.  They are really difficult to stack due to their shapes and she is sticking with it.
• Megan is now blowing her nose.  This is the first thing she has done ahead of schedule.  Most 5 year olds don't have this down yet and she is doing it.  Yes we are celebrating our little ahead of schedule snot blower.  Unfortunately due to the crazy allergies she is getting a lot of practice.
• At school every day Megan gets a rating for her day.  Most of the time she gets a "good" and sometimes she gets a "great".  There are 3 ratings lower than good but none higher than great.  I asked her teacher to explain the difference between a good day and a great day and she said a good day is a normal day for Megan - her status quo; a great day is when she is super compliant, super good at following directions, etc.  Megan has gotten a great for the past 9 school days.  9 greats in a row!

New speech therapist

Megan had her first therapy session yesterday afternoon.  Sam and I were in the room with her so that I could answer questions and explain Megan's responses, etc.  Her therapist is great.  I think she will be a really good fit for Megan.  It was a thirty minute session which is all they do at this location - it actually seems to be standard for most places here.  Every office I contacted had the same setup.

They had me put Megan in a tall wooden chair that had a buckle.  It looked like a highchair, without the tray.  Meredith sat next to her at the end of the table and I sat beside Megan with Sam beside me.  We pushed Megan up to the table and Meredith gave her some toys to play with while we talked.  Megan was having a blast playing with the various toys, especially when she saw some toys that we used to have that I have given away.  We continued discussing Megan's current status and what she is capable of doing and I would interpret/explain behaviors as they occurred so that Meredith would understand what behaviors meant and what Megan was communicating and why she was doing certain things.

About 20 minutes into the session she started playing with Megan, instead of just letting Megan play.  And about 2 minutes later Megan verbalized "more" and then started signing it as well.  With EVERY previous therapist it has taken 10+ sessions before Megan will do anything for them.  Meaning no verbalizing and no signs.

Megan was also babbling and chatting away for the rest of the session.  She was knocking (using an open hand, she wouldn't make a fist) when she was requested to do so, she was putting things in and on and taking things off - all when asked.  I am not sure what the difference was for this session, and maybe it was a combination of things: right personality of therapist/me being in the room/Megan's current situation, meaning where she is with her sleep and diet.

For the record I have been in the room with other therapists and not seen this response.  I am encouraged and excited to see Megan progress.  She will be getting therapy twice a week, Mondays & Wednesdays and hopefully we can add Fridays at some point.

Taking care of her little brother

For some reason Megan is always ravenous when I pick her up from school.  She gets out of school at 11.  We feed her breakfast before dropping her off at 8 and she gets a snack that I pack for her at some point during the morning; but still super hungry when she gets into the car.  I give her "cheerios" on the ride home to satisfy the hungry monster inside.

Anyway, Sam doesn't get "cheerios" on the ride home because he has just finished his rather large snack a little bit before picking Megan up.   On the ride home today he said to her "Megan you share snack to me please?".  Megan grabbed a cheerio and handed it across the back seat to Sam.  He of course was giddy that she shared and she was happy that he was happy.  She continued to share with him when he asked the next 3 or 4 times and then finally she stopped.  Sam kept asking, but no more sharing.  I told him to give her a break for a minute so she could eat some and then try again.  Once he allowed her some time to eat she started sharing again when he requested.

Mama, more food please

Megan is continuing to struggle with throwing food during snacks and lunch especially.  She is not getting to finish her snack at school because she won't stop throwing (she makes up for it in the car on the way home). Most days she isn't eating more than 1/2 of her lunch because of throwing and then continues the behavior with her afternoon snack.  

I have stopped using the picture cards so that I can get this behavior back under control this week.  Yesterday Megan ate just shy of 1/2 of her lunch, again because she wouldn't stop throwing her food.  Then with her afternoon snack she ate one bite and then threw everything on the floor.  I gave her a couple extra chances because she didn't nap but it didn't help.  I decided to leave her in her chair and wash some dishes while Sam finished his snack.  For the next 2-3 minutes she was whining and fussing and asking for more food by pointing to the crackers.  I talked to her and kept telling her that if she would change her attitude and stop whining I would give her another chance to eat her snack (I knew she was super hungry).  

When she finally settled down I said "if you want some more snack you need to say 'momma, more food please''.  She immediately said momma and then signed more food please.  I said great job and here I come.  She did great, ate a substantial amount before she decided to throw something again.  

This is the first sentence Megan has ever used and she combined verbalized word with signs.  

Speech therapy

We are getting Megan speech therapy outside of what she gets at school starting tomorrow afternoon.  For the moment it will only be once a week but I am hoping to get her at least two sessions a week and possibly a third.

After discussing the type of therapist who works best for Megan a lady was assigned.  At the moment the therapist only has one opening that works for Megan's schedule.  If she is indeed a fit for Megan we will pick up additional sessions as they become available.

I am hopeful that this will be a good fit for her so we can making progress.

Mirror, sleeping update, blocks and car rides

Megan has been loving having her mirror back in her room (I took it out to put edging on it).  She poses in it, turning both directions and smiling at herself.  She looks like she is checking herself out.  She does a ton of signs while looking in the mirror and claps and claps for herself.  She is also verbalizing like crazy while she is playing in the mirror.  I have started pulling out a wall mirror and sitting it on the floor for her when we are downstairs so that she will talk more and more.

Megan has been sleeping really well.  She is getting 10-11 hours of sleep every night and getting a good 2-3 hour most days as well.  She reacted to something (we think excessive perfume from a visitor) and was up for an hour a couple of nights ago but was back on track the next night.

Megan has never been a big fan of stacking blocks, she can do it, she just hasn't enjoyed it.  The past week she has been going over to the blocks and stacking them on her own.

Car rides are so much better.  She is still not at a place of just going for a ride in the car but she is much easier to "manage" in the car and can be kept happy for the most part.