Catching up and closing out 2014

Megan had a cold for 13 days in December - the last week of school and the week of Christmas.  She didn't feel like herself again until the Monday after Christmas.  She handled being sick really well and was even up for playing by herself for small amounts of time each day - which is not something she is normally up for doing.

We saw a loss of most of her new skills during the time when she was sick - not much eye contact, not much verbalizing, etc.  But with each day that she has felt better everything has returned and she has made progress each day.

She is very attentive right now - paying attention to what people around her are doing.  She is verbalizing really well and using new approximations for words we hadn't heard before.  She is repeating the words she had been saying previously on request.  She is compliant with requests again meaning she will do what we ask her "get that book and take it to daddy; go find "x"; etc".

The eye contact that we had lost again is back as well.  She is doing really well again.

Megan enjoyed Christmas this year.  She comprehended the gifts and was able to happily open them.  She did well with facetiming with her grandparents so they could watch her open her gifts - each time she wanted to go grab the iPad we just handed her another gift and she was good to go.

Megan went gluten-free 12/30/14.  This time around we were prepared for the withdrawal/detox symptoms and they showed up right on time on night 2.  She has had the same symptoms every time we have tried to go gluten free and we stopped thinking she was reacting to something in the new bread.  It only took 4 tries for us realize that it was detox/withdrawal symptoms.

A GREAT problem to have....

I am overwhelmed by Megan's progress with her speech.  Using the techniques we are learning Megan is chatting away non-stop.  The GREAT problem that we have is that before we are able to respond to something she has said she says something else.  I am running myself crazy trying to keep up with her.

Yesterday after school I explained to Sam what we were doing and he joined in and had so much fun.  Megan was talking non-stop and getting him to do all kinds of stuff - mainly turning on various Christmas toys for her.

I have a call into the program to find out how to handle her excited talking, talking, talking but in the mean time mama will continue to do the best I can.

This morning during breakfast I didn't even say anything to her about talking or telling Sam to turn on the snowman and the first thing she did was point to it and say "on" and so it began.  She ate her oatmeal and Sam turned on the snowman every time she said "on".

It is awesome that she has made the connection that she talks and we do something (basis of new program regardless of whether we understand what she is saying we respond to show her that her voice is important).

on, on, on, on, on, ON!

Megan has been able to say "on" for several months now, and she has said it on occasion when she feels like it.  We have been able to entice her to say it once that I can remember but definitely not more than once at a time.

Last night, using the new technique, Megan said "on" 10+ times.  It was AWESOME.  She was happy and proud and we were happy and proud and Sam was happy and proud.  It was a great time.  Oh and that was in about a 30 minute time frame.

Eating Out!, Dancing Snowman and continued progress

We decided to go for it and eat out as a family.  Several other FG families with very sensitive kids have been able to eat at Five Guys without an issue and even eat the fries.  We took their advice and took bread for Megan to use instead of their bun and she did great.  She was extremely happy to be sitting at the table eating her own fries.  She had a blast and even better than that she didn't have a reaction to anything.  It was so much fun to get to go out again as a family, it has been more than a year.  We will definitely do it again.

I have a dancing snowman that responds to sound.  When you make a loud noise nearby it starts dancing and singing.  Megan LOVES the snowman.  A few days ago, before I had finished with decorations on the mantel, it was sitting on the mantel with several breakable items.  I was on the phone with Will and Megan was standing beside me pointing and grunting to the mantel.  I said "you can't have anything from up there"and then I noticed the dancing snowman - which is what she was asking for.  She remembered it from last year.  Amazing.  I had to replace the batteries first and then it was on.  She played it with for an hour - turning it on and running around, dancing, repeat.  It did take her about 10 minutes to warm up to it enough that she would turn it on herself - until then she had Sam do it for her.  She continues to love playing and dancing with that thing every day.

Megan is continuing to respond to the limited program we have started implementing.  Will is still reading the books and I am still getting through all of the videos but armed with just the information each of us has we are doing what we can.  She is giving us really good eye contact both on her own and when it is requested "Megan, look at mommy".  She will look me right in the eyes when I request it and previously she would turn her head toward me but wouldn't always actually look me in the eyes - in fact more often than not she would look off to the side.  Today I learned that looking on request is on a different level than looking just when she instigates it.  Yay for her!

She has also been extremely talkative the past couple of days - pointing around the room and using word approximations "ight" for light, etc.  Tonight I was sitting in the floor and she stood up and hugged me and then started grunting to get down and I told her to "tell mommy down".  I waited several seconds and watched her thinking about it and then said "say down" and she did the sign for down.  It was incredible.  She repeated this again a few minutes later.

Hopping! Hopping! Hopping! and other updates

Tonight, for the first time, Megan hopped all by herself.  She has been hopping for a very long time, but only when she had something to hold onto with at least one hand.  Tonight she was a little hopping machine and she was having a blast!  I videoed it and she was even fine with that.  At one point she walked right up to the camera and then went back to hopping with her daddy.

She is continuing to do awesome eating at the table.  She is doing extremely well with managing utensils and just sitting there like such a big girl.

We will be starting a new program with Megan soon to help her.  We have begun implementing a tiny portion of the program and are seeing amazing results.  The part we have started working on is with her eye contact.  We are getting TONS more eye contact - so much more that it is difficult to comprehend how great she is doing.  It is so nice to have her looking us in the eyes.

Sleep update and eating at the table

A little over a week ago Megan started struggling again with her sleep - she got to the point where she was up for 5-6 hours and was sleeping until 10:15 to make up for it.  She is headed back in the right direction now and we are so thankful for that.  She restarted her b2 and she got cst yesterday which visibly helped her while we were in the office.  

This weekend I decided to let Megan eat her breakfast (cream of wheat) by herself to see how it would go.  It has been several months since we last tried it, that time she took 1-2 bites and threw the spoon and then the bowl all three times we attempted it.  On Saturday she ate 2/3 of her food before she dropped the spoon on the floor.  She ended up finishing it after getting her spoon back.  It was so exciting for her to do this by herself.  She has been capable of feeding herself with a spoon for more than a year, that part wasn't the issue, the immediate throwing of the spoon and bowl was the problem.  

After her success with her breakfast we decided to remove her tray and push her up to the table to eat for the rest of the day.  Again, last time we tried this there was a lot of throwing of food and pushing off from the table so it didn't last long.  Just like with the spoon/bowl attempt this time went so much better.  In fact Megan has been eating at the table every meal since, except for one time.   Last night she fed herself with a real fork while sitting at the table.  

This morning she ate 3/4 of a bowl of oatmeal completely by herself.  I was so proud of her and she is so proud of herself.   She has been showing us that she wanted to be more independent lately and this just goes right along with it.  

Random Words

Megan has been repeating words/phrases the last few days.  One day when I asked her if she was all done she said "ah un" immediately afterward.  If I had heard it out of context I am not sure I would have recognized it but it was definitely clear.

Yesterday in the car she said "anta" for Santa (Sam was talking about it).

She has answered "nah" to questions a couple of times this week.

Feeling great, gaining weight and granny

Last weekend we spent the afternoon at granny's house.  At one point Megan pointed at her and said "anneee".  There was no g or r but the sound was perfect.  As per her usual self, no repeat on it.  But it was awesome to hear her say it.

Megan has been feeling so great lately.  She is still waking up every night but typically for less than 30 minutes and you can tell that she isn't struggling with digestion or exposure on a daily basis.  Her coloring is better and she feels GOOD.  She had an appointment with Dr. B. yesterday and she commented on how great Megan looked.  She said, "you know I wouldn't have known that her coloring was off before, but compared to how she looks today man she was ashen/pale looking before.  You can tell she feels so much better".  Megan weighed 29.6 pounds and the scale jumped up to 30.2 a couple of times.  Woo-hoo - go Megan go.

We have gotten to where we are today with her by removing all "extra" supplements.  We just started taking them away one or two at a time until she stopped reacting.  Each time we would take something away she would have 1-2 good nights and then go right back to struggling so we would take away something else until we got to the point where she stopped struggling.  She needs all of the supplements we have removed so we are starting them back, one at a time, and spacing them out.  So instead of getting iron every day she is going to get it every 3rd day and we will see how it goes.  Once we have her established on it, or determine she just can't handle it then we will move on to the next item.

I have an appointment later this week to go over Megan's latest lab results which will tell us what else we need to get her going on - but hopefully these will help fix the problems so she stops having issues with the current supplements.

Independence!

Megan has seriously got every adult at her school fooled.  When I picked her up on Friday they told me that she did so great at recess and for the second time this week went down the slide by herself.  What?  She has been refusing to even slide and they have been buying it and sliding with her.  When I told them she had their number she started laughing and put her hand over my mouth.  "stop telling on me mommy".

Today we took the kids to the playground at Megan's school so I could video her sliding, on their equipment, by herself.  We got SO much more than we bargained for.  She had the time of her life.  One of us followed her on the equipment (up the stairs, over the bridge, to the slide) and then slid beside her or stayed behind her while she slid down the slide.  After doing this a few times and not having to assist her at all I decided to try it from the ground.

Megan has NEVER, NEVER, NEVER been on any playground equipment without someone behind her.  She won't climb more than a stair or two without us right there and we won't want her on her own since she will just stop and start coming back down the steps without holding on which she isn't capable of doing yet.

Anyway, I let her go and I stayed on the ground and she did amazing.  Will was on the other side of the equipment protecting the openings and together we had her covered.  She climbed the steps, climbed up onto the bridge, walked/ran across the bridge and slid down the slide 100% by herself 10-15 times.  On about the 10th time I took out my phone and videoed her (which she wasn't completely thrilled about); because she wasn't happy about me having my phone we had to encourage her along, but she still did it.

I shed some happy tears as I watched her do something for the first time; something that was a broadening of her independence.

Doing well with lots to say

Megan has been doing well.  She still isn't sleeping through the night but she is getting enough sleep that she is feeling good during the day.

She is contributing a lot more to conversations.  She will shake her head or say something else in sign language in response to conversations that are being had in her presence.  Today her nana was complimenting me on being a good mommy and Megan stood up and gave me a big hug and kiss.  She was saying thank you or agreeing with her nana.  It was very sweet.

She is doing this type of thing a lot and it is so fun to watch.

Carnival

Megan's sleep is progressing in the right direction - so she is coming off of the exposure from Wednesday's & Thursday's doctor's visits.

This afternoon we went to a carnival at a local church.  Megan had so much fun on all of the rides and there were several she was unhappy to get off of when they stopped.  She loves her rides and will likely be a roller coaster lover when she is big enough.

She is walking so well now you would hardly be able to tell that she ever struggled with it.  She is confident and strong and balanced.  She is doing tons of jumping just holding onto one hand - especially when she is super excited about what is going on.  Needless to say there was lots of jumping at the carnival.

Update and Incredible day

Megan's sleeping has been off/on since the last update.  She will start doing better and then something happens.  We have been pretty good about identifying the source and getting her back on track quickly.  She had good days at school last week - she was there almost 4 full days and handled it well.

Today - she had an 11 doctor appointment that would require her to be picked up from school by 10 due to the location of the appointment.  She was up last night and slept in so instead of sending her to school for an hour or so I kept her home and boy am I glad I did.

Megan hasn't been using her talker to say much lately.  She will request an item if we require her to before she gets it (laptop, ipad, etc) but has only been using it otherwise very infrequently until the past week or so.  She has started commenting on conversations and activities.  She will say 1 word that is completely appropriate to the situation/discussion and then just go about what she is doing. This has happened 2 or 3 times total until this  morning when it happened 4 times.

Megan and Sam were in the living room together while I was getting stuff together for the appointment.  She had been pushing buttons on her talker and Sam was telling me she was talking to him but I couldn't hear what she was saying so I just told him to talk back to her.  About a minute later they were on the other side of the room and Sam said "Megan, you just a little girl?" and she crossed the room and said "yes" on the talker.  There is so much about this that was thrilling.  First she never says "yes" or "no" on the talker she just shakes her head or uses her approximation for those words; second she answered a question - SHE  ANSWERED A QUESTION and one from her brother at that; she crossed the room to use her talker (this is not new but a big deal considering I wasn't in the room).

I couldn't get my phone in my hand fast enough to call Will to tell him what had just happened.

A little while later Sam and I were searching all over the place looking for Megan's "P" that she chews on.  We searched for several minutes before locating it and when we found it Sam said "we found it!" and Megan said "find" on her talker.  I didn't even know she knew that word.

She began asking for the iPad a little bit later.  She searched around the house in all of my hiding spots first and then determined that it must have been up on the mantel where Will puts it sometimes.  She kept pointing and asking for it and told her it wasn't up there.  She must have thought I was using the moment to get her to use her talker so she said "have" and pointed at the mantel and then said "iPad".  It wasn't there - I had already put it in my doctor's visit backpack but let me tell you that it was only moments before it was in her hands - such good asking deserves reward.

During her doctor's visit I was explaining her device and answering questions about how she does with it, etc.  I had it with us.  This is the first time I have taken it to an appointment because it is a lot to carry but she was doing so well with it this morning I wanted to have it for her in case she wanted it.  For most of the visit it sat in the floor across the room from where she was playing.  It was sitting there when I explained to the doctor how Megan tends to use it.  I held Megan in my lap for the doctor to examine her and Megan wanted to get down and play with the toys and I kept telling her she had to stay in my lap.  The moment I told her she could get down she climbed down, went across the room to the talker and said "down".  The doctor was impressed.

I am thrilled that she is talking to us more with it and I am overjoyed that she is using it to comment on things and not just ask for things (how the therapists always use it).  I love that she wanted to make sure I understood that she had wanted to get down, even after the fact.

New shoes, amazing stability, verbalizing, talker, colors, etc

It appears that Megan's feet/leg/walking issues could've been due to her shoes being too small and hurting her feet.  When she got new shoes last Monday she immediately started doing better.  It took her a few days to work back up to her normal self.  Then on Wednesday night her other pair of new shoes (ones with laces) finally arrived.  They were 1/2 size bigger than they were supposed to be.  We decided to try them on her and see how she did with them and what a fun test it proved to be.  She wouldn't sit down - she was standing still for long periods of time and was walking perfectly.  At one point she even almost ran to get me when I had the iPad.  She walked up the stairs alternating feet with each step.  It was a really fun night.

She now has even more stability barefoot.  Tonight she was standing still for quite a while and wasn't over pronated at all.

She has continued to verbalize a lot.  Thanks to removing her iron supplement she is back to getting enough sleep and she is so happy.  A few days ago I told Sam to go brush his teeth and then Will told Megan to go upstairs for her bath and she went to her talker and said "need, toothbrush".  It was incredible.  I have only modeled that once or twice and a long time ago.  She also told me "want nap" the other day when she was really tired.  It is so great to watch her communicate more each day.

Today at school she correctly identified several colors and pictures for her teacher.

ER visit, getting stronger, sleeping better and TALKING

We spent 10 hours at the ER on Friday after the neurologist finally called us back.  After multiple x-rays on her legs, sonograms of her hips and blood work to check for infections we were told to go home and keep an eye on her.  As long as she continues to improve the assumption is that she injured herself and is slowly getting better - though seriously it is a weakness thing that we are seeing.

She is getting stronger throughout the day, each day.  She is not back to herself yet but she is walking a little bit here and there which is so good to see.

She is sleeping so much better - getting her 10 hours a night and feeling good.  She is even napping and has been waking up happy in the morning and at nap which always means that she has gotten the sleep she needs.

TALKING....Megan has been saying new words left and right.  She has said "hair" several times, "dog", "in",  "help, sounds like el" and confidently said "mama more, mama more" when I was feeding her at the hospital.  She is saying "nah, nah, nah" and "yah, yah, yah" on a very consistent basis and "out" and "on" a lot too.

Something is up with Megan's legs

Megan had a rough night last night.  She woke up and kept trying to go back to sleep and it looked like she would be almost asleep and then she would throw herself and cry for 3 or 4 minutes and then try again.  She did this for 1.5 hours while I was watching her and then Will took over and it was another 2.5 hours before she finally fell asleep; and then she woke up early, very early so she got about 7 hours of sleep maybe.  It was so sad to see her trying so hard to go back to sleep and not be able to help her.  We really need to figure out what is causing her issues this time so we can help her.

I had decided I was keeping her home because of the sleep thing and then when I went to get her it went downhill from there.  Last night we were playing in the backyard and Megan was struggling to walk in the grass; she used to struggle in the grass but on Sunday had been everywhere like a champ never once needing assistance.  We figured she was just tired and didn't think about it again.   This morning when I got her out of bed she stood but was leaning back on me completely.  I tried to get her to stand up on her own and she couldn't; she was very unsteady.  By the time breakfast was over she couldn't keep her legs straight at all - her knees just stayed bent and she would fall down when trying to stand or walk.

What I initially thought might be some sort of fluid in her ears causing balance issues quickly became WAY more.  Megan couldn't stand, she couldn't walk, she couldn't use her legs to climb up onto the couch or my lap.  After some research Will said to give her the l-carnitine again - I was planning on giving her both of her supplements again during lunch but immediately gave her the l-carnitine.

The other thing that was obvious was that her legs were bothering her - maybe in pain, or aching or weak or something because she kept hitting them.  I rubbed them a few times when she would let me and that seemed to help a little.  About 1.5 hours after giving her the l-carnitine she stopped hitting her legs but no other symptoms went away.

She was sitting in my lap on the couch and tried to get down and as soon as her feet hit the floor she would collapse under her own weight and the frightened look on her face was horrible.  She didn't understand what was going on - I just kept telling her that we would fix it - we would figure it out and her legs would be okay again.

The other thing we did was start her on the protein enzyme - this goes along with the research but hopefully it will help as well.

As of right now (she is in the bath) she still cannot walk on her own.  She can take 2-3 steps with me holding her hips tightly and taking most of her weight and twice has done it with me holding both of her hands.  She did stand up at the couch and take a couple of steps holding onto it as well.  We are still waiting to hear back from the neurologist (obviously not happening tonight). Her other doctors all feel that based on what I described he is the best one to help.

Based on everything Will read this is reversible, just not sure how many doses of supplements it will take to get her there.

Sadly I got to hear Sam say "Mommy, Megan's legs not working".  I told him they were very tired and he said he would do a good job being quiet so they could rest.  :-(  Love that boy's heart.

NOTES: restarted l-carnitine and iron and 1/2 AFP enzyme with dinner.

This has definitely enlightened us that her body is in desperate need of the supplements and we can't just stop them like other people can.

Possible talent

Megan burped today and when she did Sam said "Megan say book! Megan say book!".  He had no idea it was a burp and it definitely sounded like she said book.  So maybe she will be the little kid who can "burp talk" during family events to entertain the others.

Not a lot of progress on the sleep front

Megan is continuing to struggle with sleeping issues. None of the changes we made last week seemed to affect anything so it is very possible that they were not the culprit at all.  We made some more changes on Monday and she had a better night Monday night only being awake for 3 hours instead of 5+ but she stayed the same last night 3.5 hours awake.  What we did was take away her two newest supplements - carnintine and iron.  We will eventually try them again to see if there is any change.

She had her weekly appointment with Dr. B on Monday and the goods news is that she is continuing to do well and progress with her CST - we are not there yet but are close to being able to start going every other week.   I am happy that she is doing so well, it means that her head should be feeling better; it also means less trips to Dallas, less appointments and more just kid time.  

Hhhhhome and sals reaction

Yesterday I got the call that Megan was tired and needed to be picked up early.   When I got into the car after buckling her in she said "h h h hom".  She said a new word "home".  I was so excited for her.  I had the though that if she would say something new every time I picked her up early I would do it every day.  :-)

I kept Megan home from school today -she was up again and once again didn't sleep in.  I made the call before I got her up and then was glad I did.  She was "off" all morning - just fussy and cranky and struggling.  Based on her no longer sleeping in it appears the pattern is a sals build-up or an ingredient in something that she can't handle.  There are 3 possibilities - we increased her fish oil dose which has lemon in it; I made gfcf banana bread on the same day; I started mixing her enzymes for school in sunbutter.  We will be lowering her fish oil dose back down tomorrow, the banana bread is all gone (she ate a ton last night) and no school today and the next 2 days.  Hopefully she will recover and be back to her true self by Monday.

A really good day at school - almost all 7 hours

Megan made it to school before 8:30 this morning.  She was up last night but slept enough to get 10 hours again.  She was a happy little girl when I dropped her off.  Her teacher said she had a really good day again until about 10 minutes before pickup when she hit her head on the floor.  She was a tired little miss.

When we got home she devoured her snack and then I took her to her room to change her diaper and she didn't want to leave.  I asked her if she was tired and wanted to lie down and she said "yah".  I said okay but I have to put your jammies on to which she said "nah, nah, nah, nah, nah".  I did it anyway, telling her I was sorry but until she got past her fits it was necessary.  She wasn't happy when I left her room but 23 minutes later she was asleep.

Her teacher said she was verbally telling them no today too which is awesome.  She just started that again this morning at breakfast.

She is feeling good, or at least better

I blogged about Megan's good day at school and at home earlier.  Will and I were talking about it and discussing everything we noticed today.

1. Megan's eyes are in perfect alignment without her glasses on.  This has only been true about 60-70% of the time the past 3-4 weeks.  And even when it has been true it has only been for a short period of time.  They were aligned tonight for 3+ hours from the time I took her glasses off until she went to bed.  
2. She is responding to "commands", meaning she is stopping when told to stop, or coming when told to come, etc.  She did it without hesitation, and without fits.
3. She really wanted to watch videos on my laptop.  This has become a constant request of hers, with her often leaving the toy room, walking across the house straight to my laptop and asking for it.  Today she did this several times and when I told her "not right now", etc there was no reaction from her.  She went with me to do something else or just walked away on her own each time.
4. She was so very happy today.  My sweet, happy girl was back
5. She was happily playing independently, without me in the room
6. She didn't throw anything, well except her food for some reason that one remains an issue even when the other clears up

All of these things showed up when we started the first enzyme and they went away after the constant exposure issues.  There are a couple of reasons why they could be back - maybe because the exposure is lessening - though she is still under it at the moment; or maybe because we increased her phenol specific enzyme to 3 times a day (every meal) instead of just getting 1/2 cap twice a day. 

We are so thrilled to see her feeling better and hope it continues for her.  

Best day of school yet

Megan is still working through the scent exposure so she was awake for two different periods of time last night, thankfully she slept in this morning.  She got to school just in time for her 10 PT session.  When I picked her up her teacher said "she had a great day!  She had the best day she has had since starting.  Man, you can really tell when she feels rested; what a difference".

I am so glad that she had a good day - she had a great time after we got home too.  She played by herself or with Sam a lot; she responded well to being told no to something she really wanted to do (that hasn't been the case the past few days).

She sees Sam using the potty and has been asking to use it too.  She has gone on the potty a few times when we have placed her there but this is the first time she has show interest on her own.

NOTES: No-F at 3 per day; l-carnitine; no dd

I hate scents!

We took Megan to the store yesterday.  As I was walking around with her we were bombarded with scents like crazy - I immediately took her outside but unfortunately the damage was done.  She wasn't over the exposure from the day before so this exposure was really bad.  She slept for 2-2.5 hrs, was awake for 4 hrs and then slept for a little less than 3 hours.  Needless to say she will not be going to school today.


Sunday NOTES: started l-cartinine

Neighbor's laundry kept Megan up last night

She was up for 2+ hours last night.  Late yesterday afternoon we went for a walk in the wagon and when we went outside to get in the wagon the smell of someone's laundry detergent/fabric softener was so strong.  She sat in the wagon for a couple of minutes while Sam got his shoes on, etc and then we went for the walk and she was exposed again when we came home while we got her out of the wagon and into the house.

UGH!

On a roll

Megan got 10 hours of uninterrupted sleep last night.  This morning we took care of her fasting blood work for the next level of testing; it can take 6 weeks for it to come back.

Once again she got a 2+ hour nap and was asleep again right around 8p.  She is certainly taking advantage of the ability to catch up on sleep and I am so loving it for her.

Chris came over for a little bit today and Megan couldn't stop hugging and kissing him.  She sure missed her buddy.

NOTES: fish oil at lunch today due to blood work; bedtime floramyces at afternoon snack

Tired, happy and doing well

I got a text from Megan's teacher at 10a saying she was very sleepy.  I picked her up and she was certainly playing the part - just laid her head on my shoulder when I picked her up.  She was all snuggly while I talked to her teacher until I told her to say goodbye to her teacher.  At that instant she started shaking her head yes, repeatedly and waved with both hands and clapped and clapped and danced.  She was so excited to be going home.

She was super tired, she went to sleep 5-7 minutes after getting put in bed.

After an almost 2.5 hour nap she was feeling good again this afternoon.  She has grasped concepts the past few days that she didn't have before.

A couple of days ago there was a bowl with about 8-10 cheerios in it on a table in the living room (long story) which she had knocked into the floor.  A little while later she went over to the bowl and picked it up and was looking at it.  I was talking to her about what color it was, that it was empty, that it was upside down, etc.  I told her to pick up the cheerios and put them back into the bowl.  She just looked at me because there were no cheerios in site - they were underneath the table.  I was standing up so I used my leg/foot to point toward them and said "they are under the table".  She looked at my foot and then leaned forward and looked under the table; she reached and grabbed one cheerio and then turned the bowl right side up and put it in it.  She looked at me and I said "get the rest" and she did exactly that.

Today I told her to take my shoes off of my feet and she came over to my shoe and started untieing it and trying to take it off.  I helped her get them off and then a few minutes later I said "put your foot in mommy's shoe" and she did.


NOTES: increased noF to 1 cap bfast, 1 cap dinner; increase phoschol to 1 cap bfast, 1 cap dinner; no dd

She made it through the night!

Yippee!  Megan slept for 9 straight hours last night.  The only downside is that she woke up at 5:30 this morning, which will make for a long day for her.  I am thinking she will crash again after school today.

Hungry, hungry little miss

Staying on track - she was up for about an hour again last night and she woke up at 6am.  She got to school today in time to walk in with her teacher.

Megan has a bruise in her pel.vic area from jabbing herself when she was awake 2 nights ago.  She also kicked herself (dare you to try it) in the same spot.  When I picked her up from school today she was escorted by the nurse, the teacher and the principal.  I explained where it came from and how she got it.  They asked that I notify the nurse in the future of such items.  I commented that she has little bruises all over her thighs from the same situation and no one said anything about that and they just looked at me.  Maybe they were concerned that I was going to think it happened at school and flip out on them.

Megan was so exhausted when we got home from school that after being home for less than 15 minutes I put her in bed and 7 minutes later she was asleep.  I don't think she has ever fallen asleep that fast in her life.  I woke her up after a  little more than 2 hours so that she could eat dinner.  Man oh man she was such a happy little girl - she clearly needed some sleep.

She ate 1.5 burgers and some chips for dinner and I just cleaned out her lunch bag so I could get tomorrow's ready and she had eaten EVERYTHING I sent her.  This is the first time that has happened.  She was a hungry little monster today - :-).

Despite the late, 2+ hour nap she was asleep by 8:30.  Here's hoping she has a good night.


NOTES: started phoschol 1 cap at bfast; skipped afternoon floramyces due to nap

Much better night

Megan had a mid-morning appointment with her pediatrician today.  The doctor is concerned about Megan's height and weight (whatever!) when I saw that Megan was in the 1st% for both weight and height I did a little happy dance.  That girl has never made the chart - she has always been about an inch below it.  Yay Megan!

The appointment went so long that it didn't make sense to take her to school, so instead she got a 2.5 hour nap this afternoon.  Last night she was only awake for 53 minutes so we are definitely heading in the right direction, away from a reaction.

Megan had an off afternoon - she wasn't acting like she had gotten 11 hours of sleep and an additional 2.5 hour nap.  Hopefully it was just an off day and not something else going on.

NOTES: upped culture to two caps

1st big round of blood test results

I had the privilege of driving in Dallas traffic by myself tonight; which isn't nearly as bad as doing it with an unhappy little miss in the car with me.  I had an appointment with Dr. B. to go over Megan's blood work results.  These are the results from the three different blood draws she had a few weeks ago.  I was expecting the results to be "bad", meaning for there to be several things that are outside of the normal range; obviously her body is not processing things well or we wouldn't be where we are today.

Dr. B. was so kind as to start the appointment off by saying "these are bad.  I mean I was expecting bad, I shouldn't be surprised based on what you tell me about her...but these are BAD!".  Thanks a whole heap lady.  :-)

Basically there are several items (alanine, glycine, iron, seratonin, etc) where Megan is way off the chart either high or low.  A lot of the items are related to the methylation cycle which was expected based on her other test results.  She does have the MTHFR gene mutation (this test showed that) and so the items relating to the methylation cycle relate to that.  There are 4 different areas that the cycle involves and she has something askew in every area.  In order to determine what is causing each item to be off we have to do more testing.  We can't just treat the area that is high or low because without further testing we can't be sure what is causing the issue.  For example, her serotonin is crazy high but that number could be high for various reasons: either she isn't processing what she is making and thereby storing the excess, or she is making too much and is using what she can and can't get rid of the excess, or the next step in the cycle (melatonin) isn't pulling what it needs and there is excess, etc.  You can see why we need to know why she has so much before treating to know exactly where the breakdown is in the process.  This is the case for every "off" item in the methylation cycle.  The testing for the methylation cycle takes about 6 weeks to get back once we complete it.  In the mean time we will continue to work on getting everything in her current treatment plan going.  There are supplements that might help her with some of these issues once we get them on board.

There are a few other items that are askew that don't have anything to do with the methylation cycle.  We will be addressing these items with her pediatrician tomorrow and will take it from there.  Some of them have shown up on previous tests and when we asked about them we were told it wasn't a big deal, etc that some people just make more or less of those items.

We still need to figure out a way to get some DNA results back for Megan so I will be speaking to her geneticist office again tomorrow.

First full day of school

I got a phone call around 10 that Megan was hitting her head, kicking herself, etc.  Her teacher said that as long as she was getting one-on-one attention she was acting fine but as soon as the person working with her left her to go to another kid the behavior would start.  I told her that it sounded to me like Megan was pitching fits for attention, as opposed to being in reaction mode.

Immediately after talking to me it was time for PT, followed by lunch and then playground.  This string of fun things must have broken the cycle because she made it through the day and her teacher said she had a great afternoon.  Today was the first day that Megan went to school for a full day.  She got to school 2 or 3 minutes after 8 and made it all the way until 2:45.

Tomorrow is Megan's 5 year well-check visit and the appointment is at 10 so unless it is a very quick visit she will be off school tomorrow.  :-)

NOTES: no new things today; no dd

She didn't make it through the day

Megan was on the right track, meaning her body was slowly getting rid of the toxins she was exposed to.  And then she went back to school.  I got a call from her teacher that they were seeing behavior from Megan that they had never seen and they were concerned.  Megan was lying in the floor, hitting her head against the floor.  She was also throwing herself down and crying.

MAN!  I knew she was getting exposed to something at school.  I knew the doctor's office was exposure but for her to not be getting better at all during the week there had to be something at school too.  I told her teacher that she was in reaction mode and I would come get her.  She was at about 60% reaction mode when I got her; the 4 minute car ride home felt more like 20 minutes.

We had an hour until it was time to go the doctor's office.  They had agreed to not turn on the fragrance at all today so the office would be without fragrance over the weekend and all day today.  I called to confirm that they hadn't turned it on and since they hadn't I went ahead and took her in.

It was a rough ride there and back but for the first time I didn't smell anything in the office.  I was definitely pleased that we wouldn't be making Megan's levels worse while we were there.

We will wait to see what kind of night she has tonight before deciding whether or not she will be going to school tomorrow.  She really needs time to detox and I NEED to spend some time in her room and around the people who are with her to figure out who/what is the source of the issue.

On a happy note we got our play iPad back from the "shop" today.  The kids haven't been allowed to play with it for a couple of months because the volume broke and it would go up to maximum volume and stay there.  I had started configuring it before I got the call about Megan so I only had 2 games on it but I figured it might help her today.  She was so over the top excited to see it that she squealed and yanked it from my hands and started tapping everything on the screen.  It definitely is the reason she made it through the appointment today.

NOTES: added 1 cap culturelle; no dd

Back to school

Last Friday I kept Megan home.  When I went to get her out of bed she didn't want to get out.  I took her out, changed her diaper and put her clothes on her and she climbed back in bed.  For ten minutes she stayed in bed not wanting to come out no matter what I said; that is until I told her that she wasn't going to school that day.  Upon hearing that she climbed right out and walked out of her room.

Once downstairs I put her in the toy room with Sam and started making her breakfast.  About a minute later Sam said "you going to school today Megan" and she instantly burst into full-on tears.  I immediately corrected the situation and told her Sam didn't know it but that mommy had already told her she wasn't going to school and she was staying home.  She immediately stopped crying.

Those two situations were both sad and good.  Sad because she was so tired and didn't feel well and probably knows that something at school makes her feel bad so she didn't want to go; and good because once again she showed that she knows what is going on and understands what is being said to her.

This morning I was trying to avoid what happened on Friday so I was all happy - You get to go to school today yay!!!!.  She wasn't excited like she was the first week but she didn't burst into tears either; progress.

Slowly headed in the right direction

Megan was awake for almost 4 hours last night but she only woke up once which is progress.  From here, assuming no new exposure (huge issue at the moment), the amount of time she is awake should decrease each night.

We woke her up at 4:30 after a 3 hour nap because she needed to be able to go to sleep tonight.  She fell asleep a little late, 8:45, but no where near as late as it could've been with that nap.

She had a great afternoon.

NOTES: remembered bedtime dose of floramyces tonight; dd 1p

Update

Another awful night for my sweet girl.  She slept for 3 hours, was awake for 3 hours, slept for 2 hours, awake for 1 hour 15 minutes.  Thankfully she was able to sleep in to get a decent amount of total sleep though I am sure it doesn't feel that way to her.

Today we are starting her protocol, meaning one by one we will be adding all of her new supplements.  The plan is to do one at a time for three days and if we don't see any side effects we will start another one, and so on until we have added everything she needs.

We went to the horse farm but it is not going to be an option for her right now.  They do not have an indoor arena and she just can't handle riding a horse, outside for an hour.

She is getting her appetite back, which is so good to see.  She has lost a little over a pound this past week and for her that is 5% of her body weight.

NOTES: started floramyces; increased no F to 1 cap per day

Playing hooky with mommy and Sam

Megan had a pretty good day, especially considering her night.  She got a 2 hour nap, which was helpful as well.

I kept Megan at home all day today, protecting her from any exposure so that she could start to detox.  We plan on going to an event at a horse farm tomorrow, but otherwise we will be keeping her home as much as possible this weekend too.

As part of the "investigation" into what is behind Megan's salicylate/chemical sensitivity issues we had a DNA test done using saliva.  The first test failed so they sent us another test kit for us to try again.  We found out today that her second test failed, the company said that some people just don't have enough DNA in their saliva for testing purposes.  The seems nutso to me, but oh well.  We are waiting on another option from her doctor so that we can try again with another company.

Her blood work is finally all in and I have an appointment next Tuesday to go over the results.  Tons and tons of things were tested and one of those is the MTHFR mutation.  It won't give us the information we need for treatment purposes, the additional DNA testing is required for that, but it will tell us if the mutation exists.

NOTES: b-1 IC, pro, 3ml oil; l-1 IC; d-1 IC, 1/2 no F; dd 330

Thursday update

Thursday update: Megan was tired yesterday because once again she didn't sleep in to make up for being awake during the night.  This is never a good sign, it means that she is continuing to be exposed to something at school.  Megan had an appointment with Dr. Brooks and they had replaced the scentsy that day and turned it off at 1p and thought that would be enough time for it to dissipate before Megan got there.  The smell was so strong that Megan lost it halfway through the appointment.  She was crying and squirming and fussing and just couldn't take it.  If it had been any other appointment I would have scooped her up and ran to the car, but she needed this appointment.  As expected Megan had a horrible night - way, way, WAY worse than any recent night.  She screamed non-stop until the moment she fell asleep.  She slept for 2.5 hours and woke up for 1.5 hours and then slept for 2 hours and woke up for 2.5 hours.  She didn't sleep in and had a rough morning and is currently flipping out in bed.  I kept her home from school because she is tired, and she needs a break from whatever she is being exposed to at school and she needs REST.

Thursday NOTES: b-1 IC, pro, 3ml oil; l-1 IC; d-1 IC, 1/2 noF; dd 6:30

Geneticist and back to school

Megan had her appointment with the geneticist this morning.  When I scheduled the appointment 5 or 6 months ago she wasn't having the sleeping issues she has been experiencing for the past 1.5 months.  She was occasionally reacting to something and then after a few days we could get her back on track.  We have no idea why we can't get her back on track this time except for possibly just being exposed at school on a daily basis.

Anyway, her appointment was at 8a so that we didn't have to wait if the doctor was behind.  We had to wake Megan up early in order to get to the appointment on time so she only got 6-6.5 hours of total sleep in 3 hour increments.  She was tired at the appointment, but we made it through.  The appointment lasted two hours and was incredibly frustrating.  They put us back on time and did vitals right away and then it was 27 minutes before anyone else came in the room and that portion took 15 minutes and then it was 40 minutes before the doctor came in after that.  No matter how many times I explained Megan's salicylate issues the doctor just didn't seem to get it.  She was surprised every time I made a reference to Megan not being able to eat something.

The next step is for her to order a "complete" genome test for Megan.  She will send the list of Megan's symptoms, etc and then the lab will test the genes they think relate to them.  The test is extremely expensive and not all insurance companies will pay for it so they are going to check with ours and let us know so we can make a decision before doing the test.

Megan went back to school today, despite being tired, and did well.  They said it was apparent she was tired but as long as they kept her busy she did okay.  That was not the case after we got home - she just couldn't function any longer so I put her down and she was asleep by 4:30.

She drank 3 full cups of water by the time I picked her up at 2:45.  That is in addition to the 1/2 cup she drank at home during breakfast.  She barely ate any breakfast, ate only half of her lunch and ate about a normal size snack at school.  She ate 2 small vanilla cookies for me for her afternoon snack.  Dinner was a success!  She ate 1.5 jr. burgers and at least 1/3 can of green beans.  She drank another 1/2 cup of water so 4 cups today.


NOTES: b-1 IC, pro, 3ml oil; l-1 IC; d-1 IC, 1/2 noF; dd 5p

A good but slightly off day

Megan was up again last night and didn't sleep in again so she got hit by the tired stick around 11:30.  It took her forever to fall asleep and then she got almost a 2 hour nap.  She didn't eat well for the second day in a row.  She only ate about 50% of her normal amount.  This is the second day in a row of her decreased appetite.  Today she drank WAY more than her normal as well.

Megan had a good day but was a little off here and there at times.

NOTES: b-1 IC, pro, 3ml oil; l-1 iC; d-1 IC, 1/2 noF; no dd

Visit with Dr. B and more new foods

Megan was up for about 2.5-2.75 hours last night.  I intervened immediately, within 5 minutes, of her waking up and went in and calmed her down and changed her diaper.  The last time I did this she was awake for less time than she had been the previous nights; this time she was awake for more time.

We saw Dr. Brooks this morning for a regularly scheduled appointment.  This was supposed to be our first week to go to once a week appointments but due to the head trauma we will see her again on Thursday.  I emailed her office on Friday just to let them know about the concussion so they would be prepared when we showed up today.  She took one look at Megan's head/face and said "oh man".  I gave her the details and filled her in on how Megan has been doing.

For the first time since Megan's initial visit she really didn't like her head being messed with.  Dr. B. was very caring and easy with Megan, reassuring her and going slowly.  She said that her frontal area was back to a 3 and that behind her eyes and ears were worse as well.  She said that she can compare Megan's head to her previous visit from Thursday and she hit her head HARD!  I know.  ugh

Megan was very tired on the way home and went to bed shortly after getting home; after getting interrupted for a diaper change she took a 2-2.5 hour nap.  She woke up so quiet I didn't realize she was awake.

I baked some new diary free, gluten free snack items today and Megan loved them.  I am just winging it and so it is great that she is enjoying the results.  Today she had soft pretzel bites, vanilla wafer cookie and the same crackers I made the other day but today I put garlic in one batch, onion in one batch and then left one batch plain.

She had a good afternoon, no fussiness like this morning; she was definitely feeling better.  She was chewing everything, I checked her molars and didn't feel anything but I think they are on the move.

NOTES: b-1 IC, pro, 1.5 oil; l-1 IC; d-1 IC; CST, adjustment, dd 1p; tested additional new snack items

Playing by herself and new words

Megan was up for 2 hours last night - her standard 1-3a 2 hour window.  Will said it was a rough two hours.  She slept in this morning so once again she got a cumulative 10.5-11 hours of sleep.  She had a great morning.  We put her down for a nap but she didn't sleep.

We had several people over when she got out of bed and she was happy to see them.  She played with different people and did well.  After dinner she played alone in the toy room while several of us played a board game in the dining room.  She did awesome playing happily by herself.

She waved and said "hi" to nana and then later in the night she pointed at her granny and said "nana".

Her eye that was involved in the incident on Friday looks really bad today and it was tender enough that she didn't want to put her glasses on.  The bruise was caused by her glasses so I am sure they are pushing on the area that is sore.

NOTES: b-1 IC, pro, 1.5 oil; l-1 IC, d-1 IC; no dd; detox bath; ate new vanilla pudding and gluten-free crackers I made

Update on our girl

Megan did well last night.  She was awake for around an hour and then got a total of about 9 hours of sleep.  She was a happy little girl this morning and did really well on our trip to get Will's truck from the hospital parking garage.  She started acting tired around 10:15 or so and made it until 11:30 before we put her down for a nap.

She got a 3.5 hour nap!  She woke up super happy and who could blame her.  She went 5 days without even getting to lie down for a rest and today we put her down and she took full advantage.  She had a great afternoon as well.  Based on her lengthy nap I figured she wouldn't be tired but she was acting tired before her regular bedtime.

We didn't see much of a reaction to anything from the hospital exposures (crackers & meds).  It could be that they were small quantities or the enzyme she is on helped her through them.  We were happy to see that she has handled the exposure better than the last time.

NOTES: b-1 IC, pro, 1.5 oil, l-1 IC, d-1 IC; dd 4p after nap; detox bath after bfast to help with hospital exposure and after dinner for routine exposure

Concussion

I got a call from the school nurse around 1p that Megan had fallen and hit her head but she was okay.  When I picked her up the contusion on her head was ginormous and the story I was given about how she got it was completely bogus.  I immediately took her to the doctor and was informed she had a concussion and that we needed to go to the hospital for a CT scan to rule out a brain bleed or fracture.  

After several hours at the hospital and having to sedate her to get the CT scan done for the second time we were relieved to learn that there was no additional damage.  They told us we had to keep her from hitting her head again for the next 7-10 days.  

Megan was such a trooper through it all.  She was fussy and definitely in pain and hungry and tired and yet every once in a while Will could get her to laugh.  

Friday NOTES: b- 1 IC, pro, 1.5 oil, l-1 IC, d-1 IC; 1.5mg versaid at hospital 6:30p, CT scan; Fed her plain Wendy's burger for dinner at 7:45 and 6-8 "saltine" crackers at the hospital with TBHQ in them.

Thursday post

Megan woke up around 9:30 this morning so she got a cumulative 10 hours again.  I think that is her number - what she needs at night.  She was happy when she woke up and only got upset for about 10 seconds which is an improvement for sure.

I finally spoke to her new diagnostician at school - this is the person responsible for managing Megan's school needs.  It is her job to process any requests for services from me and to make sure that Megan's IEP is fully implemented in the classroom.  I knew this based on battery usage, but last night I got it in writing from her teacher that they hadn't even showed Megan her talker at school....which is against the law since it is written in her IEP that she will have access to it at all times.  Her diagnostician was on her way to Megan's classroom when I hung up the phone with her to figure things out with her teacher.

Thursday and overnight update

Megan slept later last night but then was still up for 2 hours 45 minutes.  Sleeping later and then later and then later before she wakes up is a pattern we have seen before.  She has two patterns.  One is the amount of time she is awake shortens until it is gone and then other is that the time when she wakes up keeps moving later until it is late enough that when she wakes up she doesn't go back to sleep again thus sleeping through the night.  We are not there yet but it looks like this is the pattern she is currently following.

Megan had a great day yesterday.  She was finally given time with her talker at school and after her PT session she said "therapist" with it.

She had a session with Dr B. and it went well.  This is our last week of twice a week, unless only getting one next week causes her to regress.  She said "Light" almost perfectly at the doctor's office.  It was good to hear it again.

She has been doing better in the car, even with our long car rides.  I attached one of her chewy P's to the strap and it seems to be what is making the difference.  She chews on it a lot, when she isn't eating o's of course.  I think it must relieve her head stuff and so she handles the rides better.

NOTES: b-1 IC, pro, 1.5 oil, l-1 ID, d-1 IC; dd at school, CST, adjustment

Wednesday update

Megan ended up sleeping until almost 9am yesterday and she had a great day.  She was still tired yesterday afternoon but she was much better than she has been.  She made it through the 3rd day of school without damaging her glasses at all, instead she stretched her shirt out by repeatedly taking it off.  :-P

Megan continues to tell us "no" appropriately here and there.  She is also using her talker to request "television on".

Last night she was awake for 2.5-3 hours and at 9:11 she is still asleep this morning.

Wednesday NOTES: b-1 IC, pro, 1.5 oil; l-1 IC, d-1 IC; day 3 of no dd - gave her pear with breakfast

New approach may have helped make it a better night

Megan woke up at 12:40 extremely unhappy.  She was going crazy and was still at it 12 minutes later.  I decided to try a new approach, something that we had tried in the past, but didn't work; but Megan is different now so I figured it was worth a shot.  I went into her room and got in bed with her.  I told her she had to lie down or I would have to leave.  Previously she would have sat up every 5-8 seconds and have to be told to lie down and most of the time helped to do it.

Last night she didn't sit up one time.  She did pick her head up a few times but quickly laid it back down when instructed.  I ran my fingers through her hair and stroked her face and told her I was sorry she was awake and that mommy and daddy were working very hard to help her so that she didn't have to hurt anymore.  I tried rubbing her tummy but she was clearly in pain and didn't want me touching it.  I tried to rub her head, again she immediately moved my hand.  Based on what we know is going on and what she has been exposed to I assume her stomach was in pain and she had a headache.  :-(

I was able to soothe her for 15 minutes or so before she started feeling better.  Once she started feeling better she continued to obey and lie down but she started kicking her legs, etc.  Everything from the waist down was in motion.  I told her it was time for me to leave and as expected she was not happy about it.  She screamed for about 10 minutes and then calmed down and started playing.  I handed the monitor off to Will so I could get some sleep (1 am and hadn't gone to sleep yet) and he took over.  He said she played until 2, cried until 2:30 and was asleep sometime between 2:30-3a.

It is currently 7:30 and she is still asleep.  She has had about 10 hours of total sleep at this point.

Rough night and round 1 of test results are in

Megan had an extremely rough night.  Not only was she up for 4 hours 15 minutes but every 30 minutes she would be almost asleep and then start screaming again.  Ugh!  She finally got back to sleep at 5am so I wasn't expecting her to make it to school.  She woke up around 8:30 and was very unhappy but calmed down after 8-10 minutes.  I got her up and she was good to go.  She didn't seem tired, she was doing okay.
She ate all her breakfast and was playing well. I asked her if she wanted to go to school and she didn't say no, and she had told me no not that long.  I had been offering her the Y and she kept pushing it away and on my third try she said "NO" and threw it across the room.  I apologize and said "I got it".

I took her to school just before 10 and she made it through the day.  I was planning on picking her up at 1 but her teacher said she was fine.  She completely broke her glasses during pick up, after having broken the nose piece yesterday.

Will and I went to the doctor to get Megan's first round of test results (urine/stool).  The doctor said "you are definitely on the right track with salicylates and if you are not already you should be looking at oxalates too".  Bahahaha.  Lady I am not making up what happens to her when she eats these things; imagine what the numbers would've looked like before we started FG.  Her Benz were high too.  There were a LOT of indicators that she likely has a MTHFR mutation - we are still waiting on the DNA results for that information.  Based on the symptoms of that mutation I, and the doctor, would be shocked if she didn't have it.  It explains so much - all of her major issues are on the list of symptoms, including her over the top sensitivity to chemicals.  Her vitamins are all over the chart (she isn't able to process what she eats, again no brainer), and her enzymes are off as well.  The good news is she doesn't have candidia - yay!  She has one type of yeast that is a little high, but not out of whack yet, so doing preemptive treatment.  There was a bad bacteria that was off the chart - we are consulting with her pediatrician on that one to address it.  We are treating everything with a series of supplements working our way up to 11 at breakfast, 7 at lunch, 6 at dinner and 2 at bedtime.  Some of them will be discontinued over time (30 days, 90 days, 4 months) as issues resolve.

I am working on a delivery system to get all of these things into Megan.  They are all in capsule form so that we avoid flavorings but that is making it more difficult to get them into a substance that she will accept.  We are ramping up slowly, adding 1 thing every 3 days.

NOTES: b-1 IC, pro, 1.5 oil; l-1IC, d-1IC; day 2 no dd

First day of Kindergarten

This morning, about 15 minutes ago, I dropped Megan off for her first day of Kindergarten.  She did amazing!  Before we left the house I sent Sam to get in the car so I could have a couple of minutes alone with her. I was dancing with her and I told her I was going to miss her today and she put her little cheek on mine and snuggled me for several seconds.  Such a sweet little miss to love on me.

When we got to school I parked and got the kids out of the car.  I put Megan's new backpack on her, which she hadn't even seen since I bought it after she went to bed last night.  She was very excited to put it on - it weighs less than the one from last year and she is a little stronger than she was so she walked with it without a problem - no tipping over this time.

She walked with me through the parking lot and right up to the doors where her teachers were waiting.  She went right to her assistant teacher, whom she had just met, and tried to walk into the building.  I got there early today because I had to fill out a form so that they can give Megan her enzyme with her lunch.  I said to Megan "wait a minute I need bye kisses before you can go inside".  I finished the form and she walked up to me and gave me kisses and hugs and Sam and I walked away.  She was standing there the entire time, able to watch us for a good minute or so while we made our way to the car.  I don't know if she was watching us or not, I didn't turn around.  I did see her standing there talking to her teacher when I drove out of the parking lot.

Yesterday we removed all gluten free items from Megan's diet.  Something was up and because we had added so many things in a very short time frame we couldn't know for sure what was causing the 5 hour sessions.  I had a hunch that it might be the new bread since she had some samples the day before we went gluten free and that was her first night up for 5+ hours.  The new bread has molasses in it which a lot of kids react to.

Last night we were hoping she would get some decent sleep, but were expecting her to be awake for 3 hours as that would be her typical progression after having been up for 5+ hours for several nights.  I couldn't sleep so I was able to see her "trigger times" pass without incident.  She woke up at 10:59 and was back asleep by 11 - basically she just made a noise when she rolled over.  She made it past the 11:30 trigger and then the 12:45 trigger and then the 1:30 trigger and then woke up a few minutes after 4a.  She got 9 hours and 15 minutes of solid sleep before she woke up.  She may have gone back to sleep for a little bit and then woke up again at 6a.  She was playing so Will went back to sleep and then she started crying again at 6a which means she could've dosed off again and woken back up.

Aside from the 7 hour thing my biggest concern for her leading up to today was that she was going to be up all night and then super tired when she finally woke up and have a rough day because of it.

NOTES: b-1 IC, pro, oil, l-1 IC at school, d-1 IC; CST, adjustment

Tired but talking

Such a tired little miss today.  Megan played as long as we were right there with her, but she was so tired.

On a happy note she is babbling more today.  In response to questions twice today Megan verbally said "no" to me.  It was awesome.  I just sat there a little surprised - my girl talked to me, appropriately, verbally.  Yippee!  Will said she said "no" to him twice today too.  Will and I talked about it and compared what happened and with both of us she just said no like she has been saying it to us all along - she wasn't proud of herself for doing it or surprised she just said it and went about her business.

Tonight before bed I told her that tomorrow as her first day of school.  I reminded her about the new room and teacher, etc and asked her if she wanted to go to school tomorrow and she smiled at me.  After having said "no" four times today I didn't get one, I got a smile.  I told her that if she has as rough of a night tonight as she did last night and she is too tired to go that I will not take her tomorrow and we will wait for the next day.


NOTES: b-1 IC, Pro, Oil, l-1 IC, d-1 IC; stopped gluten-free bread and snacks, added gluten back in and Megan sneezed again this afternoon for the first time in 2 or 3 days; detox bath; dd 2:30, no nap

Pretend

Another rough night for Megan last night and unfortunately she didn't nap today, so it was an early bedtime for her.

She had a fun morning and even did well on a car ride in the late afternoon.

I downloaded a video from youtube that Megan loves.  She gets really excited and claps and dances to the music.

Yesterday we had a lot of fun playing pretend with a big scoop.  She was pretending to dump its contents on my head and I would react and wipe it off.  I showed her to scoop from a container and eventually she decided the container was empty and scooped from the floor into the container a few times to refill it.  I was impressed.  It was fun to play pretend with her until she got really excited and would whack me with the spoon, but I will take it.


NOTES: b-1 IC, pro, oil; l-1 IC, d-1 IC; dd 1:30, no nap

Progress, if you don't count the sleep

Megan was awake for 5.5 hours last night.  She was just starting to settle back down when Sam fell out of bed and started screaming.  And sadly she still woke up early so she didn't get much sleep at all.  She had a good morning despite her tiredness.  She got a 2 hour nap today, which is good.

Will and I have been going over everything trying to figure out anything that might be causing her to wake up. She is currently taking her probiotic at dinner so we will be changing it to breakfast and hopefully that will help.

Despite the continuing sleep issues we have been noticing improvements in other areas.  She is able to control behaviors that she wasn't before.  Yesterday she was poking herself repeatedly and wouldn't stop and I told her that I was going to put her down for nap if she poked herself again.  She stopped immediately and didn't poke herself again for 30 minutes, at least.  What started the poking was me asking if she was ready for nap - clearly she wasn't.  :-)  That is just one example of many instances over the past 2-3 days.

The other thing that has been going on for the past 3-4 days is that when we ask Megan a question her immediate reaction is to move her mouth.  She is moving her mouth like she is talking, though at the moment sound is not coming out.  It is so fun to watch her try to respond to us.  She has been a little more verbal the past two days, saying words that she had started and then stopped saying.

NOTES: b-1 IC, 1.5ml oil, l-1 IC, d-1 IC; no dd or detox bath or probiotic

Meet the teacher

Tonight Megan, Will and I went to her new school and saw her classroom and she got to meet her teacher and 2 of her 3 classmates.  As expected, she is much smaller than the two children we did meet, but she held her own.  She even gave the little boy a kiss on the arm as he ran by her.  He was running around constantly and she thought it was great.  She kept smiling and clapping and telling him to go, go, go.

She loved her room.  She loved being in the school, walking down the hall.  Her room is HUGE.  It is about double the size of her previous two rooms and there are half the kids.  The first thing she did was walk right up to the table, pull out a chair and sit down.  We showed her her seat - she has a placemat with a red butterfly and her name on it.  She kept touching the butterfly and smiling.

She walked all over that room exploring everything and everyone who was in the room.  7 hours is still going to be a very, very LONG time for her to be away from me but at least she was happy in the room tonight.

She had a wonderful day today, despite being up for 3 hours again and waking up early.  She woke up happy and stayed that way all morning.  We went to 3 stores this morning and she was fine in the car the entire time.  I was only planning on doing one of the three stops but since she was fine I decided to do the next and then the next.  She did great in the stores too.  She had a great time playing at home too.  I put her down for a nap because and she was almost asleep when I realized she was dirty.  I changed her and then she didn't go to sleep and right at the time I was headed to get her she was asleep.  She was dirty again when I had to wake her up (you read that right, I woke her up) so that she could have dinner before going to the school.  I am thinking she must have been dirty again before she feel asleep and she was just tired enough that she managed to go to sleep anyway.

NOTES: b-1 IC, Oil, l-1 IC, d-1 IC, pro; dd 1:20, 4:30

Almost a great night and a good day

She had a great night until she didn't.  She progressed as expected by waking up and going back to sleep in just 30 minutes.  That is what was expected IF she woke up at all last night, based on her previous patterns.  And then 45 minutes later she started crying again and settled and then she sneezed 4 times and decided to give up sleeping and play for 3 hours.  Such a bummer for her.  She slept in until 9:30 and woke up happy, but still took a 2 hour nap this afternoon which was awesome.

She started her Gluten-Free, Casein-Free (GFCF) diet today.  I have been trying to get things together to start for a couple of weeks and finally decided to take the plunge.  Prior to going FG it wouldn't have been a big deal at all but since the rest of her diet is so restricted her snacks are all gluten items.  Today she had some brown rice crackers with garlic powder and loved them.  She really enjoyed her sandwich with the new bread I baked yesterday too.

She also started back on fish oil today.  This one is much more potent than the one she had taken in the past and is supposed to do a lot of good things for her.  It is lemon flavored.  Her previous one was strawberry, which is a no-no right now.  This one you have to work your way up in dosage so today she started with 1.5 mils which is just a little more than 1/4 tsp.  I put it in a syringe so that I could just get it all in at once.  She swallowed it but gave me a "what the heck was that" look.  I am hoping to be able to sneak her vitamin into it in a couple of days because she really doesn't like it and hasn't taken it no matter what I put it in.

NOTES: b-1 IC, 1.5 mil Oil, l-1 IC, d-1 IC, pro; GFCF: Day 1; dd 9:30am

A Nap, a teacher and going GFCF tomorrow

Megan was up for a little over 2 hours again last night which is actually not a bad thing since she wasn't worse than the night before.

Megan had her appointment with Dr. B. this morning.  She had a better car ride to/from but definitely seemed tired on the way home.  She kept resting her head on the side of her seat.  I stopped at a store on the way home and picked up some GFCF snack options for her.  By the time we got home both kids had eaten a ton of snack so I decided to just forgo lunch and put them straight in bed.

I told Megan that I would be back to get her up in a little bit and that I just wanted her to be able to get some rest before our afternoon appointment.  I checked on her before heading up to get her and she was asleep.  She hasn't napped in several days.  I take this as another good sign that we are headed in the right direction.

Rather than wake her up after a 15 minute nap I left her in bed and went to the teacher meeting by myself.  It was a good meeting; her teacher is very nice and seemed genuinely interested in all of the information I provided her.  She will be very accessible to me during the day and that is helpful.

I am planning on starting Megan's 90 day GFCF diet tomorrow.  I had been holding off until I could make a bunch of stuff from scratch for her but I am just too tired so I picked up several snack items already and will be getting a few more tonight.  I also made a GFCF bread for sandwiches and she helped eat 3 slices already.

NOTES: B-1 IC, 1 VIT(didn't make it down), L-1 IC, 1/2 VIT, D-1 IC, Pro; dd 3p

Hopefully headed in the right direction

She did a little better last night, was only up for 2 hours so we are headed in the right direction.  I feel like this is related to the fragrances she is exposed to at the new doctor's office.  I took some fragrance free soap for her to use prior to Megan's session today; which she did happily.

Megan's hair did not smell after her appointment today so that's good.  Since she has the first appointment of the morning and their office manager holds off with turning on on their warming candle until after our appointment the office isn't that smelly when we get there.

I had been spacing out Megan's visits because it seemed to me it would be more beneficial to her to get a treatment every few days; but that means her exposure has been being spaced out as well so that as she starts getting better she is exposed again.  After discussing it with the doctor this morning I changed Megan's second appointment this week to be tomorrow morning.  Hopefully the change in soap will be enough to fix the issue but if not at least she will be able to get over the exposure and have 2-3 nights of good sleep before she is exposed again.  Eventually (in 1-2 weeks) she will only go once a week and then it will be every other week and then once a month.  It just takes time to get her to that point.

Once again she did not sleep during nap today.  This has been consistent every time she has seen the doctor.  The dr is shocked because the treatment supposedly makes people sleep.  :-P  She was very tired late afternoon and I think I got to witness what it is going to be like once she is at school - though it might be worse since she at least got a rest time today.

Half of her initial lab results are in and as soon as the other test comes in I will have an appointment to review the information with the doctor.  She said she will review the blood work results at a different appointment.

Granny stopped in for a few minutes tonight and Megan loved doing the hokey-pokey with everyone before her bath.  She really loves that song.

NOTES: B-1 IC, L-1 IC, D-1 IC, Probiotic; CST, adjustment, blood draw, dd @ 3:10

Getting records up to date

Friday NOTES: 1 IC b,l,d standard day with 3 hour nap, detox bath lunch & dinner
Saturday NOTES: 1 IC b,l,d, dd 6:15, detox bath dinner; kept her up all day - asleep by 6:45.  Woke up 10:45-1:15; slept until 8:45ish.


Sunday
Good day.  Still acting very tired.  Thinking that maybe she feels like she has only gotten the amount of sleep she gets after she wakes up as opposed to the total hours.  Put her down to rest for 2 hours but didn't allow her to go to sleep - not that she as trying.  She was very tired this evening.  She was extremely hungry.  She ate a ton all afternoon.

NOTES: 1 IC, b,l,d, dd 2:30, detox bath after dinner

Dr. B appointment

Megan did okay to/from Dallas.  She is having a bit of a rough day - she will be fine and happy one minute and then notsomuch the next.

She did well with her CST today, the doctor said the back of her head is better today and her ears were way more sensitive.  She kept moving when she was working on that area.  At one point she just moved her head to the side and looked up at the doctor.  She got an adjustment today and did well.

She did not sleep during nap.  She was so tired but just couldn't get to sleep.  She kept covering up with the blanket and then she would fuss until eventually she gave up and started playing.  I am not sure what was going on - her hair smelled like the soap (I think) that the doctor uses so maybe that was the problem.

She was so tired that she got her bath immediately after dinner and then went to bed super early.  She did decent, only screamed for about 10 minutes.

NOTES: 1 IC bfast, lunch, dinner, CST, adjustment, dd 1ish, detox bath

She made it!

It took Megan about an hour to get to sleep last night with her crying/screaming off/on that entire time.  She wasn't going after her ears/hair though it seems she has  retained her new technique of kneeing herself.  Though I don't like that either it is preferable to injured ears or losing hair.

She slept until just after 7 and she wasn't happy when she woke up but she got over it after a few minutes.

What made the difference?

• Her teeth seem to be doing better are they giving her a break or is chewing on the Y chew making a difference
• She got a very long extended detox bath last night before bed.  She hasn't had one in several days - just regular baths

Update and I was punked!

Megan slept from 10ish to 3:45 am.  Thankfully she took close to a 3 hour nap today and an early enough of one that it shouldn't affect her ability to get to sleep tonight.  She had a good morning - and actually did really well when I wasn't in the room with her.  If I was in the room she just wanted to lay on me.

This morning I got up and came downstairs for a little bit before getting the kids up.  I was hoping that Megan would go back to sleep like she was having her "regular" night, meaning going back to sleep after being awake for 3 or so hours.  It didn't happen.  She was playing and I was watching her and then I noticed.....she was no longer wearing anything.  She has still been sleeping in her arm bands and so she not only got out of her jammies she got out of her arm bands.  I ran upstairs and she was just relaxing in her bday suit and looked at me like "what?".

At nap time I put the arm bands in a different pair of jammies.  This pair is good for 2-3 wears Before it stretches enough that she can get out of it.  I was keeping an eye on her every few minutes just making sure there wasn't another incident when I saw her bending her completely bare arm and scratching her ear and then her nose.  Hmmmm.....I ran upstairs and opened her door to see her sitting in her bed with her arm bands still on and her jammies hiked all the way up so that her legs were completely bare.  My little flexible girl had been using her leg and foot to scratch her face.  I have seen her do it many times but because of this morning and the fact that her leg was bare I thought it was her arm.  She was not thrilled that I burst in and then left again.

Tonight she is going down in her houdini-proof jammies without the arm bands (they don't fit) for the first time since this round started.  It is possible she will go after her ears/hair but we can't be checking on her constantly to make sure she is still dressed if she wakes up again tonight.

NOTES: 1 IC breakfast, lunch, dinner

Bedtime better

She was up for 3 hours again last night but she didn't wake up at 11:30 for the first time in a long time.  Yay.  Now to get the teeth done.

Megan had her 2nd blood draw today and thanks to some finagling she only has to do 1 more instead of 2.  The lady today was a pro and Megan did great despite having to sit there while 12 vials were filled.  None were completely filled but that many different ones were needed for the tests.  We got home late and after a quick lunch put the kids down around 1:30.  I was on my way to get her out of bed when her teacher called.  By the time I got off of the phone 20 minutes later she was asleep; and sleep she did.  She slept from 3:40-6:50.

I expected bedtime to be really really horrible.  We kept her up an hour late and she went down pretty decently.  She did cry a little but nothing like she has been doing and certainly not what I expected after her nap.



NOTES: 1 IC breakfast, lunch, dinner, dd 7:30

Teeth, appt & new teethers that she actually likes

Last night was just a repeat of the last several nights.  There was one difference, Megan woke up happy this morning.  For the first time in a long time she wasn't the least bit unhappy when she woke up.

Her gums don't feel any different this morning and they definitely still hurt.

She had her CST this morning.  I asked the doctor to check her neck to make sure there was nothing out of place from her falling and hitting her head.  She checked Megan and said everything in her neck and back was perfect and she didn't even need an adjustment.  :-)

Slight progress with her CST - she said her ear area is better today.  Her jaw, on the other hand is still in bad shape due to the teething.  She did say that the treatment today should help her and the more she has the more they will help with the teething pain.

I purchased Megan some "chewy" items.  Technically they are not teethers - they are for strengthening jaws and helping kids with texture issues, etc.  However, they are designed to reach all the way to the molars and they come in various "toughness" levels.  I purchased Megan two "P" shape ones and a "Y" shaped one and she loves them.  She has already chewed on them, especially the Y, more than any other teething device we have ever given her, and we have tried a ton.  I hope they are able to give her some relief and help her teeth come through sooner.

Megan did not sleep during nap today - as much as I want her to sleep it is not horrible that she didn't nap since in two weeks she will no longer be getting a nap.

Megan's regular bedtime is 8p, if she doesn't nap we usually put her to bed around 7p.  Tonight she climbed down out of my lap and laid down on the floor.  Laying in the floor is a huge indicator that she is ready for bed so Will went ahead and took her up around 6:30 and she was asleep by 6:53.  She still cried when he left the room but it was way better - I didn't even need the headphones to drown out the sound.


NOTES: 1 IC breakfast, lunch, dinner; dd 1:15, CST. No chiro adj needed

UGH! We are not a fan of the molar action

Megan had a very rough night with her teeth.  She woke up at 11:30 and went right back to sleep.  This is what we see with the sals issue so we know that is under control.  Then she woke up around 12:30 and escalated from there.  She was up crying off/on until 3:30 and then she didn't sleep in this morning and didn't nap.  Made for a very tired little miss.

Her teeth are really bothering her - she is working on both of her bottom molars right now.  She is in enough discomfort that she is allowing us to massage them for her once in a while.  I wish there was something we could do for her that would actually relieve her discomfort.

She went to bed well tonight - she did cry but not for long.


NOTES: 1 IC breakfast, lunch & dinner, dd 12:45

Great day

Megan had a great morning.  I took a much needed nap and Will put her down at 12:30 and she was asleep by 1:15.  She took a  3 hour and 15 minute nap.  She had a really great afternoon but did not want to go to bed.  I let her stay up late because she got so much sleep during her nap and she slept late.

She did better with getting into bed but started crying once I left the room.  I don't blame her - she is not tired but I can't keep her up until 10p.

Megan did a great job with imitating today.  I would do something and while doing it say "do this" and she would mimic it.  Everything I did, I did twice - meaning I would pat my head twice, etc.  I did things twice so that I would know if she was actually copying me. I wasn't able to get her to make any sounds with her mouth but the fact that she was doing it and with me saying "do this".  When I filled out some paperwork in late May, early June it asked if she could do things by us doing them and telling her "do this" and no matter what we tried she didn't respond.  So, this is good progress.


NOTES: 1 IC breakfast, 1 IC dinner, approved ibuprofen at bed time, no dd today

Molars causing issues again

My phone is full of photos of the kids, photos of Megan.  It has been a long time since I was able to take photos of her without upsetting her and I am really enjoying it.

Megan's night started out great.  She woke up at her "currently usual time" and was able to get right back to sleep in less than 2-3 minutes.  It is interesting that despite getting the enzyme twice a day instead of once like last time she is progressing at the same rate.  About an hour later she woke up again and this time was really struggling.  I was watching her and saw that she was trying to get at her left ear (she is still in the arm bands).  All afternoon yesterday her bottom left molar area was bothering her and it was obvious from what she was doing while she was crying (no screaming) that it was hurting her.

I decided to go into her room to see if I could help her because she would cry, lie still and appear to be asleep and then 2-5 minutes later start crying again.  I rubbed on her left jaw and she immediately did the feet stomping that really hurts thing.  So I massaged all around her jaw area and even on her gum as much as she would let me.

She wasn't happy when I left the room but calmed down quickly.  However, she went right back into the same routine of appearing to be asleep for a few minutes and then crying for 1-2 minutes.  This cycle repeated for 45 minutes until she was finally asleep around 2am.  She woke up at 8:15 this morning a little bit unhappy, but not too bad.  Because of her early bedtime she still got 10.5 hours of total sleep so hopefully she doesn't feel like a zombie today.

Better night, much better day and pretending with mommy

Megan had a better night, though still not a better bedtime.  She was only awake for 1.5 hours and she slept until 7:45.  She had her first of 4 blood draws today.  Yes I learned when at the lab today that because of Megan's weight and volume limitations her blood work will require 4 different draws.  So not happy - they actually had to dig around today.   She handled it like a champ but I was covered in sweat when we were done.

Megan had a great morning.  She did okay with our two, very short, car rides.  She wasn't fine but she was much better than yesterday.  She had a great time this morning playing with Sam and I was even able to do some dishes - gasp!

I was playing with her in her bed after her rest time.  I laid down and snuggled her baby like I was sleeping.  When she took the baby away from me I said "waa, waaa, waaa" and then grabbed the baby and stopped crying.  She looked at me kind of funny and then took the baby away again.  I started crying again and she grabbed my hand, maneuvered it so my thumb was sticking out and then she put my thumb in my mouth.  I thought that was great - she never sucked her thumb, she doesn't have any dolls that suck their thumb but she must have seen it somewhere.


NOTES: 1 IC bfast, dd/mushy 11a, 1 IC dinner

Molars and appointment

Her molars are on the move again.  She doesn't seem to be in much, if any, pain but the drooling has really picked up again, as has the reflux.  She let me in her mouth two days ago without a problem but yesterday I had to work for it -though there was no feet stomping pain response when I felt of her gums.  THIS WAS FROM YESTERDAY.....today I realized that her newly reappearing car issues are related to her teeth.  She is having a horrible time in the car again and I know it is her teeth moving around.

She had a better afternoon yesterday, though she never napped.  Her bedtime reaction was still bad, but better.  She woke up just after 11:30 and was extremely unhappy about it.  She calmed down after about 30 minutes but continued to cry for another 30ish minutes.  She then started playing.  She was awake for a long time and thankfully did get back to sleep eventually and then woke up at 8:30 this morning.

We had her appointment with Dr. B this morning and got CST and a chiropractic adjustment.  She did amazing with the CST this time - did the whole treatment while laying on the table instead of having to be in my lap this time.  Her stiffness numbers aren't better since Monday and her jaw area was stuck today and it wasn't on Monday which is probably due to her teething issues.




NOTES: 1 intolerance complex with breakfast, CST, adjustment, 1 intolerance complex at dinner

Complete list of behaviors and symptoms

Megan when you are older and are reading through your blog books someday I want you to know that this list is purely for the purpose of us ensuring that we are recognizing all progress.

It is easy to forget little symptoms and behaviors and therefore lose the ability to see progress is and has been made.  In order to avoid this I am compiling as complete a list as I can.  With our most recent setbacks we started seeing a lot of behaviors that used to be daily and it was a nice reminder of how far she had come - though I prefer looking back on the list rather than having them come back again.

BEHAVIORS/SYMPTOMS

• Pulling hair
• Pulling ears
• Poking face
• Pinching self and others
• Biting hands, wrists, arms, legs
• Kneeing self in the mouth/chin
• Kicking self in head
• Hitting head on wall/floor/car seat
• Unhappy in the car unless has cheerios and/or someone singing to her
• Removing glasses
• Throwing toys
• Throwing food
• Taking food out of mouth
• Throwing sippy cup
• Putting everything in mouth, hands, toys, books, shirt - always needing something in mouth
• Keratinitis - bumps on arms and legs
• Drooling
• Reflux
• Constipation
• Salicylate sensitivity
• Fear of tunnels
• Fits when seeing someone (mommy) walk by, etc
• Throwing fits/screaming when put in bed
• Removing other people's glasses
• Not happy playing in a room without an adult
• Taking off diaper and not stopping when instructed to stop
• Always gassy
• Bumps, maybe warts, on fingers
• Diaper rash
• Eye turning in and shaking
• Sleeping issues

Back on the enzyme

Megan's night went pretty much exactly as it did after her initial first dose of the enzyme, with the exception of her bedtime flipping out.  I think she didn't think it was time for bed and she expressed it with an hour of screaming.

She woke up again last night for 2.5 hours but her time when she was awake was better than it has been and then she slept in until 9:30.  This is what she did last time.  The difference this time has been how she is doing out of bed.  She did great this morning as long as I was with her, but didn't do well when I left the room.  We made a quick trip to the store and she had the worst car ride in a long time.

I was originally planning on keeping her up since she had gotten so much sleep but after the way it was going I went ahead and put her down for a nap.  She got her enzyme again at lunch today so hopefully that will help her work through whatever is going on.

NOTES: 1 intolerance complex at lunch, dd 3:15

Rough night and 2 more tests complete

Megan was awake from 10:30-12a and then woke up at 4:30 and never went back to sleep.  Ugh!  I was able to complete her urine test this morning so now we wait for another dirty diaper today.  I gave her some pears this morning (hasn't had any in months) to try to expedite matters.  She was extremely happy to see them and enjoyed them very much.

She is a bit of a handful this morning as she is super tired but as long as Sam and I do exactly what she wants at all times she is good to go.  :-)

She had a dirty diaper at 11:30 so I called Fedex to pick up the package.  She is napping right now and I am a happy mommy.  She will get her enzyme with snack this afternoon.

NOTES: 1 intolerance complex at 2p

Testing progress and first CST

Megan has woken up the past 2 nights (no enzyme) and screamed for 30 minutes and then cried for 30 minutes and then spent 30 minutes putting herself back to sleep.  We expected issues because of taking away the enzyme and though her screaming at nap time and bedtime is worse at least her sleeping isn't horrible.  2 nights ago she slept until 9a and this morning only until 6a.

She has been having good days, just needing a little extra support.

We were able to get enough saliva for Megan's DNA test last night and mailed it in today.  It will take 2-3 weeks to get the results back.  Megan had a dirty diaper today so now we need one more, hopefully tomorrow.  I put cotton balls in her diaper tonight so that we can get her overnight urine sample in the morning.  She has to fast for 8 hours for her blood work so I am going to take her first thing in the morning one day this week.

Megan had her first CST session today.  She did really well, but would take the doctor's hand off of her head and would pull her head away.  The doctor said every patient she has ever treated reacts this way during the first session because it feels weird.  Megan was never in pain or upset she just wanted the doctor to move her hands.  At one point she moved her hands to a different spot on her head and the doctor said she hadn't worked on that area yet and she took care of it.

Dr. Brooks said that they rate the movement of the scull on a scale of 0-3, with 0 being what you want to achieve.  All of Megan's were either a 2 or 3.  She said that ideally her numbers will start changing by the 3rd treatment.  She warned me that Megan could be extremely hungry and tired as a result of the treatment.  She didn't appear to have either.  She did take a 1.5 hour nap and woke up unhappy, like she didn't get enough sleep.   She was very hungry at dinner and started yawning a lot an hour before bedtime so we put her down about 30 minutes early.  Maybe she had a delayed reaction.