Yikes!, glimpses and new doctor

With the exception of bedtime we are coming out of it but man the past few days have been atrocious.  All of the behaviors that disappeared when we changed Megan's diet and she started sleeping were back.  All of them.  She started screaming when we put her to bed.  At first it was just for 10-15 seconds and then it was 1-2 minutes and now it is 20-30 minutes.  She is screaming and throwing herself around and has earned her way back into the arm bands for the past 2 days.  She has a couple of almost bald areas now from just the past 1.5-2 weeks.  

In the beginning it was just the screaming at bed time and then on Monday she had a little bit of a rough day and started having issues in the car again and by Tuesday afternoon - whoa baby.  She was aggressive, defiant, pinching, biting, poking, pushing, going from happy to tears and pulling her hair out in a split second multiple times a day, banging her head, crying, not okay being left alone or even with me just in the room she had to be touching me.  We kept thinking her teeth were hurting her so bad that she was just losing it because she would flinch if I tried to check her gums.  

On Wednesday afternoon I had a phone call with her new doctor (more on that in a minute) and she said something that made me start thinking about things differently.  We weren't even discussing Megan's current situation it was just a random comment on something.  I knew that the medicine we had been giving her wasn't working.  When we originally realized she was waking up at night because she was in pain we gave her the meds we had on hand which was a dye free Advil, it was still flavored but we figured she needed something.  She got that medicine for 4 nights before I realized that it contains benzoates.  Megan had started being aggressive about that time and that is what benzoates do to her so I went in search of an alternative.  The only pain medicine I could find that was dye free, artificial flavor free and benzoate free was acetaminophen.  

We haven't given her any acetaminophen in years because of the potential issues it can cause in people with brain injuries.  I called her pediatrician and she said the amount and frequency wouldn't cause an issue and Megan needed something so we gave it to her.  It was only once a day, at night, except for when she started really struggling in the morning I gave it to her then and not at night that day.  Her pediatrician had warned me that it wasn't the greatest at helping with teeth pain and when Megan was still obviously having issues and then started flipping out on Wednesday morning I gave her a dose of the Advil and then......nothing changed.  It finally occurred to me that, though she was probably still having teething pain issues, the behaviors we were now neck deep in had to be related to exposure to something.  At first I thought it was a new food item but it seemed like an excessive response and FINALLY after the doctor made her comment I thought...hmmm the acetaminophen.  Sheesh.  

The initial aggression and screaming was likely caused by the benzoates.  The lovely behaviors that showed up a few days later had to be the new meds.  It fit the timeline.  Wow.  So we stopped giving her meds. She hasn't had anything since 9:30 yesterday morning and she hasn't had acetaminophen since Tuesday morning around 11 and she is coming out of it - except for the flipping out in bed.  

What has been truly amazing about the past few days of madness is that even with all of that going on in her little body there were still glimpses of not only her sweet self but also crazy good progress.  She was happily selecting the correct animal when requested (horse, cow, pig, sheep), she was happily identifying body parts (eyes, ears, nose, mouth, chin, cheeks, forehead, head, hair, knee, etc) . She had been temporarily "grounded" from the blocks for repeatedly throwing them and when she went to get one I told her (from pretty far away) to stop that she wasn't allowed right now and she did.  She sat there, 2 feet from them and didn't touch them.  Megan doesn't like to "perform" and she doesn't typically obey when there are blocks involved yet she did both.  She also turned around and looked for something when I told her it was behind her.  She has never done that before, so she learned what it meant.  She will now also look at where my finger is pointing when I am trying to show her where something is.  Again, not something she has done before.  There are a few other things as well so she is continuing to progress despite the war raging in her due to the med mishap.  

We are always searching for ways to help Megan.  We both feel that her salicylate issues are caused by a gut problem, maybe leaky gut.  She has had digestive issues since birth, she was a preemie, there were toxins involved when she was gestating...her gut needs to be healed.  Following the Feingold diet has showed us what to avoid feeding her so that she doesn't react, but we have been walking blind with regard to what is right to give her and what we should avoid (unless we see a reaction).  We have been trying to find a good functional medicine practitioner and ended up finding so much more.  The lady that we will be meeting with on Monday (so excited we were able to get an appointment so soon) is a nutritionist, chiropractor, DAN!, craniosacral therapist and biofeedback.  She will be developing a treatment plan for Megan that consists of lots of testing to see where Megan's system is lacking things, etc and then telling us what supplements, treatments, etc are needed in order to help her.  We will no longer be guessing we will have data to know what she needs and what we have to avoid.   Not everyone responds to the treatment this way but a good portion of children find their voice after successfully cleanses toxins, replacing nutrients, etc.  We are hoping that this will be a huge step for Megan in her recovery from her birth.   

Sleep, molars and laundry help

We figured out what was causing Megan's recent sleep issues, she is cutting her 5-year molars.  Based on the timing of the rest of her teeth we didn't expect these to start making an entrance until she was at least 6, but here they are coming in before she turns 5.  Maybe it is the diet change and now her body is struggling less with processing things, who knows.  All of the signs were there, we just didn't put it together: her teething induced reflux started up again, excessive drooling returned, biting her fingers/hands so much that she was leaving bruises, messing with her ears, waking up crying.  Once we started giving her something for the pain she went back to sleeping through the night.  She has been up for the past 2 nights due to something we fed her on Sunday, so we are waiting for it to be out of her system.  Ugh!

Megan was in the laundry room with me last week and she helped me get the clothes out of the dryer and then she took the clothes out of the washer (we have a front loading washer) and put them into the dryer by herself.  It was so adorable watching her grab something, take a couple of side steps and then put it into the dryer.  Every few items she wanted to start taking stuff out of the dryer and putting it back into the washer.  She is at the perfect height for this task and man did she enjoy it.

Eat Make More

Megan hasn't been talking via her "talker" for the past couple of weeks, more just exploring it and occasionally saying "more". I opened up all of the words and she has been touching different ones and checking out what they say.  This is way less than she was using it and I just keep modeling and keeping on. The past three days she has said something that I thought was a fluke, except she keeps saying it.

Every single time she is hungry....."Eat Make More". I thought maybe because I say I have to "make" dinner, etc; but then I realized the picture for make is a cupcake. I think she is asking for cupcakes.

Fun day for mommy - great progress for Megan

As always it is amazing what some sleep will do for Megan.  She has slept for the past 2 nights and took naps two days in a row too.  This morning she was feeling so happy and definitely well rested.  We were sitting on the couch reading books with Megan's talker beside me.  She would reach for it and grunt, etc asking for it and I would get it for her.

I decided to work with her on a sign for her talker so she could ask for it without grunting and also when it wasn't in the same room; so the next time she asked for it I said "Megan, here is how you ask for your talker" and I showed her the sign with my hands and then helped her do it with her hands, then I gave her the talker.  The next time she started requesting it I said "how do you ask for your talker?" and then 3-5 seconds later she did the sign.  I praised her and confirmed that she said talker and gave it to her.  This scenario happen again, she grunted, I prompted, she did the sign; and then the next time she requested it I was just silent and ignored her.  She kept pointing and grunting for 20-30 seconds and then she stopped, worked to get her hand into the right position (just her pointer finger out) and touched her other palm.  She did the sign without me prompting on just the 3rd time she wanted it since I showed it to her; and then she BEAMED when I said "you want your talker".  She was so proud of herself and I was so very proud of her.

What was great was she did the same thing one more time, where she grunted first, I ignored and then she did the sign and THEN she started just doing the sign.  She would do the sign, I would acknowledge it and she would smile.  Most of the time she didn't even want her talker, she would just push it away but she was so very happy that she could ask for it and I understood her.  She did this for the rest of the day - just doing the sign and asking for her talker.

After nap, though she didn't sleep today, we played with her tea set for the first time. Meaning we played with it correctly.  I showed Megan how to pour the "tea" from the pot into the cups, and then stir and drink.  She was pouring into my cup, her cup and sometimes Sam's cup.  She would stir her cup and drink from it.  She was doing great.  I had so much fun, it was really difficult not to tear up because it was such a big step for her to just sit there and play with me without throwing, putting the toys into her mouth and to be pretending so well.

Catching up....

Megan has been having sleeping issues again for the past few weeks.  It all started when we went to a family party and the house we walked into was so saturated with fragrance (candles burning, air freshener, perfume) that Megan started having a reaction with 1-2 minutes of entering the house.  We got her outside in less than 5 minutes but the "damage" had been done and she had the worst night she has had since starting the new diet.

It took her 4 days to get past the exposure issue and then two days later she was walked through a store's perfume section and she didn't sleep that night.  Since then she has slept off/on for the next week and then has been up every night for the past 7 nights in a row.  She has been handling the sleep deprivation pretty well until this morning.  She was back to her old behavior: nothing making her happy, throwing everything she could get her hands on, non-stop, biting her brother if he got anywhere near her, just miserable.  Thankfully she was able to nap today and she was much better this afternoon.

Because of the sleep issues she hasn't been that interested in her talker and I haven't pressed the issue until this week.  I decided to close down the options on the screen and simplify working with it again to get her using it again.  We worked with it for just one afternoon and she was back on track.  She is back to talking more now too.  In fact she is saying "mine" or rather "MINE" quite regularly now.  It started three days ago when she and Sam were playing at the water table.  They have several scoops and cups to play with and her favorites are the measuring cups.  There are plenty for both of the kids - in fact there are 2 of each cup but she still doesn't want Sam to play with them so when she sees he has one she wants it.  He is generally compliant because there are 8 of them so he just grabs another one and lets her have the one that she wants.  Well for some reason, maybe because he was tired of giving up the one he had, she asked (yelled/grunted/reached out to grab it) for the cup he was holding and he wouldn't let go of it and she then said, very plainly and LOUDLY "MINE!".  He dropped it.  I happened to be recording them at that moment so I caught it.  She has continued to say it since that time and most of the time it has been related to wanting the measuring cups.

Yesterday we got a new pool for the summer.  Previously we have had little ones and this year I decided to get one that is big enough for everyone to get in together, but shallow enough for Megan to be able to sit down.  She loves being in it so much.  She will stand up and play and play and play - dumping water on her head, throwing water at people, splashing and telling Sam "mine" when he tries to take one of the measuring cups we put in the pool.

She loves all of our new outdoor toys as much as Sam.  She loves playing in the house and climbing the slide and of course the jeep.  She loves to just sit in it and play the music.  We got her a transition swing - one that you sit in and that still buckles but that can change to be used without a buckle when she is ready.  It is nice to be able to get her in it without scratching her legs like the current one can do.

She was doing well with her ABA therapy - she had 3 "get to know you" sessions and was supposed to start the real work 2 weeks ago but her therapist came down with the flu.  She really likes Michelle and responds well to her so I am looking forward to seeing how things go when we can get started.

Megan and Sam are playing together so well lately (except for this morning).  They are not just playing beside each other, but with each other.  They are playing chase, pushing each other on toys, making each other laugh and playing with toys together.

We are seeing that she is comprehending and able to communicate new things lately.  She was hurt the other day and I asked her to show me where it hurt and she picked up her foot and gave it to me.  I didn't see anything but Sam said "sissy dropped the block on her toes mommy".  She has done this before, showed me what hurt, but I wasn't sure it was correct, clearly it was.  I have gone into her room during nap to change her and asked her if she was dirty and gotten a "yay" or "nah" and each time she gave the correct response.  She is doing really well with following directions too.

So much talking

Megan is talking all the time now, well it feels like all the time because she used to not say much and now she says at least 1 word a day and most days 2 or 3.  Here is a list of words that we are hearing on a consistent basis: bye bye, hi, open, up, yes ma'am, amen, eat, more.  Today she also said "here" while giving me something.   We sign bye bye to the playground every time we drive past it and Sam always asks to sing it when we turn into the neighborhood.  If I am quiet long enough Megan will say bye bye to request it too.  It is awesome!

We then sing hello house when we can see our house and 2 days ago Megan said "elo ous" with us.  I heard it and Sam said "Megan said hello house mama".  Most of the time when she says something Sam understands what she said.  It is still in the approximation stage for some of the words but some of the others it is crystal clear.  

She is doing really well with her talker.  She has been doing well using it.  She doesn't want to use it to work, meaning trying to get her to use it to learn new words, etc; but she is doing really well using to tell us what she wants.  Last night she used it to tell Will "book, go, Sam".  In order to say that she had to hit Read and then book, go, Family and then Sam.  She talked in a sentence to have Sam get her a book.  It was awesome!

We are so excited about all of the progress she has been making lately.  It is so much fun to be doing something and then hear her say a word.  

Great day at school with her talker

Megan took her talker to school this morning for the first time.  Her teacher said she had a great day today (her last two days were really rough) and that she did really well with the talker.  She said she got it out during centers and Megan knew where to find the toys on her talker.  I was thinking "of course she did" but I said "I am so glad she showed you what she can do with it".

Then she said "and she was really babbling, I have never heard most of what she said today".  I told her it is related to the talker and anytime she is around it she just chats up a storm.

Maybe Megan can help open their eyes to not discount what parents say their kids are capable of and instead allow future little ones to try more options.