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.