Behaviors

Megan developed several "bad" behaviors when her sleep deprivation started.  Though she is still not back to a regular sleep schedule, she has been getting more and more sleep.  With the additional sleep I have noticed that some of her behaviors have started disappearing, or at least becoming much less frequent.  Unfortunately some of them have morphed into habits that we are working to "unlearn".

Behavior Status:

• Pulling her hair out.  This one is one of the ones that has morphed into an unwelcome habit.  The behavior started in her bed when she wanted to sleep but couldn't.  The nights that this happens have decreased, but it still occurs when she is really upset.  The habit part of this is that anytime the status quo changes it is her go to coping technique.  If she is frustrated, upset, nervous or even extremely happy she will grab her hair right behind her ears and yank on it.  
• Biting others. During the height of her sleep deprivation Megan was biting everything and everyone for no apparent reason.  Obviously the reason was she was exhausted and frustrated that she can't sleep.  She would bite Sam just for the heck of it.  Thankfully the more sleep she gets the less we see this one.  Instead of her biting someone 10-15 times a morning she has gone 3 days without biting at all. 
• Biting herself. This one is generally done when she is frustrated about not getting her way, or not being able to do something she is trying to do. This is another one that has changed into a habit as well.  I have seen it a lot less the past week as she has gotten more sleep

Changes

Megan has been changing over the past few weeks, especially in the last 7-10 days.  Not only has she said a few words but she is trying to talk quite often.  She tries and tries to say words, she points at things and struggles to find the right sounds for them.  She will have me tell her what something is over and over again as she tries to imitate me.

She has always used our hands to do things or pointed at things and grunted for them but she is now walking over, asking for something, walking back to us, grabbing our hand and taking us to the item and talking to us about it some more.

Today when I was playing with the kids I asked Sam if he was my little buddy, mommy's little boy and he said "yes, yes, yes" and giggled.  A few minutes later I asked Megan if she was my little miss, mommy's little girl and she emphatically shook her head yes, clapped her hands and smiled a huge smile.

She will audibly tell Sam more when she wants him to do something again, like turn on a toy or play chase with her.

She is engaged, she is responsive and she is initiating conversations.  She is doing great at school.  She has started interacting/play with the other kids.  Her and another little girl in her class pretended legos were hats last week and were putting them on each other's heads and then giggling about it.

Talking, sleep and starting to run

A couple of weekends ago Uncle Mike was at the house and Megan tried very hard to say his name.  She said "m, m, m, mi, mi, mi" very excitedly.  It was a wonderful moment because she was trying to talk.  Well, since then she has really taken off.  She said "dada", "up", "on", "ip (ipad)" and "hat".  Every single one of those words were thrilling to hear, but hat was by far the best because she had never made an "h" sound before.

All of this talking started after she got 4 uninterrupted nights of sleep in a row, followed by every other night for a couple of days.  We have been doing everything we can to help her sleep and this just proves how very important it is for her development.  She has started on a new medication that will hopefully help her to sleep through the night so that her internal clock can reset.  It worked the first night, but did not work last night.

Megan got new orthotics last week.  These are actually the same ones she had previously, just bigger.  She is doing amazing with them. Her gait has narrowed and she is so much more stable.  She has started really moving and is almost at a run a lot of the time.

New Neurologist and new skills

Megan had her first appointment with her new Neurologist yesterday.  He is wonderful and was wonderful with Megan.  His first plan of action is to get Megan sleeping again.  It has been 9 months since Megan's sleeping issues started and he is going to help her get back to sleeping.  I am very excited about this - excited that he is trying something new for her right now and if this doesn't work he will try something else until she is better.

Megan has several new skills.  She is able to stand still for 10-15 seconds at a time.  She can walk sideways and backwards as well.  All three of these items were next on the agenda for her PT in NC.  Today while walking around Megan bent down and pushed a ball and then followed it and repeated the behavior several times.  She was doing this with a large ball so she only had to bend down part of the way but she was showing great control and balance.

Following directions

Megan started really following directions several months ago.  If we asked her to bring something to us or to not/stop touching something she would stop, etc.  Today she followed directions given to her by her toys.

This morning she was standing up, holding onto the sit-n-spin trying to get on it when she pushed the button and it said "Elmo says SPIN" and Megan got a look on her face, stood back up and turned in a circle.  She then got on the sit-n-spin and started playing.

Tonight she was playing with a toy that said "Can I have a hug please?" and she would squeeze it as tight as she could each time it asked.

Walking up the driveway and progress report

Yesterday morning after school the kids and I were playing in the front yard.  I was holding Megan's hand while she walked down the driveway because it is a pretty steep incline.  When it was time to walk back up she let go of my hand and took off by herself.  She walked all the way to the front door by herself.  I was so impressed.

I received Megan's 9 week progress report today.  To say that things are different from her previous school would be an understatement.  All of the goals listed below have a target completion of the end of school, however as she masters them new ones will be created.  There are a couple of goals that she hasn't started yet so I am not including them since there hasn't been any progress.  Below is a run-down of her progress.

- Follow 2-step directions with 80% accuracy: 50% Megan is able to follow familiar two step directions (pick up the napkin and wipe your face) but she struggles with unfamiliar two step directions (touch your head then touch your toes). 
- When provided with cues and prompts Megan will use verbalizations, signs and/or pictures to request activities with 80% accuracy: 10% with maximum cues and prompts (they just started introducing pictures)

Three of the next four Megan does at home all the time so it is a little frustrating that she is still not doing them at school, but at least she is starting to do them.
- When given a hand rail and close adult stand-by assist Megan will ambulate up 3 steps with a non-alternating pattern with 80% accuracy: 42%.
- When given a hand rail and close adult stand-by assist Megan will ambulate down 3 steps with a non-alternating pattern with 80% accuracy: 15%
- When given access to the preschool setting and adult supervision and no more than 2 verbal cues Megan will independently ambulate to transition from one learning center to another with 80% accuracy: 35%
-When given access to the preschool playground and close adult supervision Megan will independently ambulate up and down the crossing bridge with 80% accuracy: 40%

- String a minimum of 4 beads on a dowel rod or pipe cleaner decreasing in size as tolerated with 70% accuracy: Megan is able to place large beads on a dowel rod when given assistance for object orientation and occasional physical prompts.  Progress is at 25%
- Complete a 4-5 piece inset puzzle with 70% accuracy: Megan is able to complete simple shape inset puzzles with large knobs when given prompting for choice limiting and visual cues.  Progress is at 25%
- Stack a minimum of 4 items decreasing in size as tolerated with 70% accuracy: Megan is consistently able to stack large blocks on the floor when given a demonstration.  She requires physical assistance to stack cups or smaller items at this time.  Progress is at 25%
- Imitate vertical and horizontal pre-writing strokes with 70% accuracy: Megan has made great gains with this skill.  She is able to imitate lines after a hand over hand demonstration and assistance to initially position her hand.  Vertical: 30% Horizontal: 30%
- Squeeze scissors to snip paper with 70% accuracy: Megan is currently in the teaching phase of this skill.  We are working on squeezing items to improve hand strength and increasing tolerance for hand over hand assistance.  Progress is at 10%

Going down stairs & check 2 off

Megan has learned to get down the stairs.  She can now scoot on her bottom all the way down.  She practiced on the bottom three stairs for a few days and then yesterday started from the top and she was so proud of herself (me too).

I get progress sheets on Megan each day that outline what IEP goals she worked on that day and how she did with it.  They have been working on her OT goals each day, specifically threading beads onto a pipe cleaner and stacking foam blocks.  Both of these are things I told them Megan could already do, but she needed to do them for the teachers for them to "count".  Well, today's note said they had moved to working with using scissors because Megan "does good" with the other two items.  She completed two of her 5 goals and gets to move to something new.  Yay Megan!  There are things about her new school that I am still adjusting to, but I am definitely pleased with it.

Recovering from ear infection and puzzles

Megan wasn't feel great this past weekend and then on Monday she coughed off/on all night.  On Tuesday I got her in to see the doctor and they said she had an ear infection.  That cleared up some things, on Monday we were in the car and she would just start screaming in pain for no apparent reason - her ear was obviously hurting.

She is doing better today, she started doing better yesterday afternoon.  She feels good, but she is still really struggling to sleep at night because she is coughing so she is a little tired.

Megan is more interested in puzzles right now than she has ever been.  She would play with one for a minute or two but then move on to something else when she couldn't get the pieces to fit.  We have been playing with puzzles a lot the past 2 days and she is doing really well with them.  I see her using a technique that I know they have been using with her at school.  It is good to see progress and that things are sinking in.

Possibly congenital trigger finger

The weekend before Megan's ortho appointment I noticed the ring finger on her right hand had started getting stuck.  It was extremely easy to release it though Megan's finger can't do it under its own power it has to be helped.  I talked to the orthopedist about it and this one said that no amount of buddy-taping would fix it; that is can come and go, etc.  It is still very minor but something we have to keep an eye on.

He mentioned that this can be congenital, though I haven't researched it yet.  It makes me sad to think that she could possibly have another surgery in her future.

Catching up from our new home in Texas

Megan loves our new home; she loves all of the open space she has to walk and push her shopping cart, baby stroller and wagon.  She will walk back and forth non-stop until we distract her with something else.  She was also thrilled to see stairs again.  The first time she saw them she climbed up and down them until we made her stop.  Because we have spindles she can even walk up them when she wants to.

She can now climb on and off of her bouncy horse by herself.  She can also climb her slide by herself, though she still needs supervision with it since she sometimes tries to skip a step.

She has also learned how to climb onto and off of all of our furniture.  She had started trying to get on our furniture before we moved but she was only successful about half of the time.

Megan has been feeding herself for a couple of months now.  She is even using the spoon with breakfast with Will holding onto it to keep her from throwing it - but she is doing all of the work herself.  She is getting good with using signs or the pictures to ask for "more" food.  We are adding more pictures into her day to help her communicate.  Two nights ago she used her green sheep book to tell us that she wanted to go to bed.  She found the page with the bed sheep on it and kept touching it until we figured out what she wanted.

A couple of weeks ago Megan was yelling to get my attention and I told her to use her words.  She stopped, got a look on her face like she was really thinking about it and then she tried to say something - she opened her mouth and tried to say something but nothing happened; then she got upset and grunted and yelled at me.  It was a great thing that she tried but sad that she couldn't do it and got so frustrated.  She has started using more and more signs again.

Yesterday at Megan's ortho appointment she was identifying animals on the pages of a new book.  I told her what they were and then would change the pages and go back and ask her to touch the animal and she would do it.  She did great.

Megan has been walking a lot in public now.  She was in the grocery cart the other day and was unhappy, so I took her out.  She wanted to get down and then she proceeded to follow Will as he walked through the store.  She then walked all over the sidewalk outside while Will was checking out.

Since being in Texas Megan has gotten new glasses (twice, because she broke the first pair) and new orthotics.  Her new glasses a little stronger and she likes them.  She still messes with them and will take them off but it is so much less than with her old ones.  She looks so cute in them too.  Her new orthotics just slip into her shoes to give her a little support, but she does great without them too.  Her new orthopedist said he would never have guessed she had low muscle tone when he saw her.  Her alignment is the same when she is barefoot.  We did see a difference when she got them so we will keep using them, she seems more confident and she doesn't fatigue like she was without them.

Doing really well

Megan had another great day today at school and then she did so awesome tonight.  She is walking really well and chatting up a storm.  We were playing tonight and I was getting her.  At one point Will told her to walk to me and she sat down, shook her head no and said "no no".

First day of Pre-K 4

Megan started school today and she did great.  She was so excited when we walked down the hall, granted she didn't want to walk much because there were people everywhere.  She was clapping and smiling and giving me kisses all the way to her door.  Her substitute teacher was standing in the hallway and Megan went right to her.  I took her back to say good-bye and after my sweet hug and kisses she got down, walked up to the table, pulled out a chair and climbed into it.  She was ready for her classmates to arrive so they could have some fun.

She was hungry and tired when I picked her up (she had a rough night) and still as happy as could be.

Speech and communication progress, growth spurt/new shoes, cousins

Megan started making great progress 2 weeks before we left NC.  She verbalized her first two-word phrase.  She was playing bubbles with the therapist and had been saying "mor" and then said "mor buh-buh".  It was a VERY exciting day.  She continued to verbalize "mor" and even said "o-en" for open during her last therapy session.  She has always "pointed" at things with her entire hand but has also started pointing with just one finger, which isn't a big difference to me, but it is on the checklist; so yay Megan!

She started climbing/walking like crazy at the playground by our house just before we left too.  She was walking over the hump bridge without holding onto anything, and Sam still doesn't do that.  She was so proud of herself.  She learned how to climb onto the coffee table and can get up on our couch if she tries really hard, it is a little too high for her to reach easily.  

About 2 weeks before we left NC Megan had an appointment with her orthopedist and he said he thought she would outgrow her orthotics in 3-6 months so we should just keep an eye on them.  Within 3 days of being in TX she started having issues with them and by 3 days later they were too small.  Yesterday I spoke to her NC doctor and he agreed to fax a prescription for her to an orthotist so they can fit her since we can't get in to see a new doctor here until November.  In the mean time they told us to just put her in tennis shoes since she is able to walk barefoot and she should be fine.  Fine was an understatement.  We went yesterday afternoon and got her fitted (she is now a size 5!) and she loved them.  She walked everywhere.  We let her walk some in the mall and she kept going into a store and turning around and coming out, she did that at least 10 times before I directed her to keep walking down the hall.  

The last time she was downgraded as far as support goes she started doing better and yesterday was no different.  

We are staying with my mom until our house closes and my nephew Chris lives with her.  Megan adores him and can't get enough of her extra-large (6'8") cousin.  She also loves my mom's furniture because it is low enough she can climb off/on by herself.  

Finally getting regular sleep

Megan slept 10 hours last night and that is what she has been getting every night this week.  Her doctor suggested switching her allergy meds to the morning to see if they were waking her up.  Originally her allergy meds were the only thing helping her sleep but obviously that changed and they were indeed the cause of her waking up in the middle of the night because as soon as we switched she stopped waking up.

I was nervous that giving it to her in the morning would knock her out but it hasn't caused any issues.

Moving down a size

All of the walking Megan has been doing has caused her to lose most of her cute little love handles.  Without the extra little girth she can no longer keep her 3T shorts up so I had to pull out her 2T shorts again.

Happy 4th birthday

Megan had a great day yesterday.  We gave her a tricycle that also has a handle on the back so we can push her around.  She loves to be pushed but to also just use her feet on the floor.

She really enjoyed her chocolate cupcake too.

Today was her 4 year checkup.  She is now exactly 3' tall and she was 1/2 ounce shy of being 26 pounds.  The doctor was please with her jump in height and her progress.  He said she was wonderful, then no amazing and that still wasn't a good enough word.  She walked all over the place and had a blast.  He asked for updates on her throughout the years because he is going to miss our little miracle.

Houdini strikes again

We have been putting Megan in a very specific type of pajamas for more than a year now.  It is the only type she can't get out of.  If we put her to bed in anything else she will get completely undressed and then take her diaper off, all within a couple of minutes.

Last night our little houdini figured out how to take her diaper off without taking off her pajamas.  She was awake way later than she should have been so I went in to see what was up and everything was wet.  I have a solution, I am going to start putting a pair of training pants on over her diaper so that she can't get to the velcro.  I currently use training pants as bloomers for her so I have some on hand already.

Needless to say we had a very rough night - she went to sleep 2 hours late and then woke up at 4 and hasn't gone back to sleep.

We have a walker

Megan is now walking most of the time.  She will start to crawl and I remind her to stand up and walk and she will do it most of the time.  Megan is now walking 90-95% of the time and doing an excellent job of it.

Working things out

Megan continues to do great with walking.  If we are in an open space she will walk and walk and walk, hundreds of feet.  She is still struggling with walking instead of crawling/hopping in smaller areas like home but she is getting better when I remind her.

She was awake again at night two night's ago but right now she has had 9.5 hours and is still sleeping so hopefully her new dosage of meds is going to do the trick.

SLEEP!!!!

It is currently 7:09 am and Megan is still asleep.  She fell asleep around 8:30 pm so she is working on 10.5 hours of sleep right now.  Yay!  I joked with Will that she knew she had to see Beth (her PT) today and that she was going to have to work hard so she decided to get some sleep.

Hopefully this is going to continue and we won't have to increase her meds tomorrow because tonight is the last night on her current dosage if she isn't sleeping through the night.

Catching up

The delay in posting has been because of Megan's sleeping issues and my resulting tiredness.  This is going to be as concise of an update as I can do for the past couple of months.

• Megan had surgery on her trigger finger because it was getting worse instead of better and it was starting to hurt her.  The surgery went extremely well and she did amazing.  Her finger wasn't opening all the way and so we have had 2 follow-up appointments but have been given a month before our next one and it is looking pretty much perfect now.
• Because of her sore throat from surgery she got orange sherbert (we had some) for the first time and loved it.  She also got to eat popsicles which she enjoyed as well.
• Because of her exhaustion from only getting 1-3 hours of sleep a night for 4-5 weeks she stopped walking and talking and doing much of anything.  Thankfully, now that she is back to getting at least 7 hours a night she is back on track.
• She can now stand up in the middle of the floor without assistance and she is walking again like crazy when she wants to.  She is definitely getting on her way to full independent walking.
• Last week she really started to flourish during her speech sessions (again more sleep helps a lot).  She is using sign language and shaking her head yes and no
• The sleeping issues were/are being caused by a severe iron deficiency which is causing her to have restless leg symptoms making her whole body twitch.  Her Ferritin level was 7.2 and needs to be above 50 to get rid of the symptoms.  She is getting 2 doses of iron a day to bring her level up.  In the meantime she is also taking a medicine to help suppress the symptoms, she is still waking up at night so her dosage was just increased two days ago.

Feeling good and adventurous and remembering her daddy day gift

Megan has been sleeping through the night again the past 2 nights.  She is still waking up for a few minutes a couple of times a night but that is common for her.  She is so happy during the day because she feels normal again.  This weekend we took them to a couple of parks and she did great with walking and climbing and sliding.  She is even going down slides that she wouldn't before, like a tunnel slide (she is not fond of tunnels) and a really big corkscrew slide; and she is loving them when she does it.

I had Megan pick out her gift for Will a couple of weeks ago.  I had her choose between several t-shirts and she picked one that said "Dad: This is what a hero looks like".  There were others that were more cartoonish but this is the one she wanted.  When I handed it to her to give to Will yesterday she got so excited and started clapping and dancing and she handed it to him.  She remembered the shirt and was so happy to give it to her daddy.

Wonderful day and night

Megan had a wonderful day yesterday.  She had gotten enough sleep (7.5 hrs) that she was up for walking and climbing and playing yesterday morning and then got a 2.5 hour nap so she was a happy camper yesterday afternoon too.

Last night Megan was asleep at 8:05 and woke up at 10 for a few minutes and then slept until almost 7.  She got a normal night's sleep and you can tell it this morning.  She is so happy and acting like herself including eating and eating and eating this morning.

Megan's night

Megan woke up after a couple of hours last night because she had a dirty diaper.  She will not sleep through the night with one so I changed her when she woke up.  Based on how things have been going I knew she would have a hard time with me putting her back down.  3 hours later she was still upset so I took her downstairs to try to rock her to sleep. 

It took quite a while for me to get her to sleep because she was just wanting to play but it did happen after about an hour.  We moved her mattress to the living room floor so I could move her out of my lap so she could be more comfortable but as soon as I tried to sit up with her she woke up.  I tried to rock her back to sleep but she wasn't having it so I put her in bed and thankfully after only 2 or 3 minutes she was asleep and she slept for 5 hours straight.  So she got about 7-71/2 hours sleep total last night and boy you can tell this morning.  She is happy, and she is currently happily playing by herself (not something she has wanted to do in a long time).

So, in case you were wondering Megan had no twitching or jerking of any kind while sleeping in my arms. 

Will and I have our theory about what caused Megan to have seizures.  We did a lot of research and Megan had several triggers occur right before they started.  Megan got overheated several days in a row, followed by lack of sleep (exhaustion) which led to not wanting to eat or drink causing dehydration.  Any one of those items can trigger a seizure and she had all three.  I haven't discussed this with her doctor, but plan to when she calls to discuss Megan's EEG results either today or Monday.

June 13 update email

Email sent June 13:

Full story below, but for those who don't have time to read a long email Megan got sleep last night and preliminary EEG results showed no seizure activity - Prayer works!

Megan had her EEG yesterday and it was not a fun experience. She was exhausted and didn't want to have all of the stuff on her head and of course wouldn't go to sleep.  She pretty much screamed through the test and the removal of everything.  Her neurologist office is located next door to the testing facility so after the test I walked over to talk to her nurse.

I know that is not what you are supposed to do but I didn't care I did it anyway.  Because of the last minute scheduling of her EEG we weren't given a packet explaining everything to us so we had no information regarding how long things would take.  The nurse told me that it usually takes 1 week for results but that they put an expedite on Megan's and it would be 1-2 days.   They had told us (we talked several times yesterday before the test) that if Megan had seizure activity again for more than 5 minutes that we needed to take her to the ER; so I asked her if we were supposed to take her to the ER every time she slept until we heard back from them.  She said she would talk to the doctor and get back to me. 

I went to bed when we got home and Will took the call.  Our instructions were that if we saw her having a seizure we were supposed to wake her up and if waking her didn't stop them then we had to go to the ER.  Will and I were both like - SERIOUSLY, wake her up - crazy people we would have been trying to get her to sleep for hours at that point.  The other thing she said was that the doctor briefly scanned the results and she didn't see ANY seizure activity.  She said that she would still need to thoroughly go through the results so this wasn't final, but just her preliminary thoughts.  Megan didn't sleep during the test but they assured us that it would still show activity if it was there. 

I know what happened 2 days ago and I KNOW how prayer works.  We believe that Megan is healed and therefore nothing is going to show up even after hours of looking over her test.  AND we have additional proof of this because here is what happened last night. 

Megan finally got to sleep at 9 pm.  She woke up at 9:30 (I almost cried at this point) and then in 10 minutes she was asleep again.  She went back to sleep on her own for the first time in more than a week.  She woke up twice more and went back to sleep in 10 minutes each time.  So Megan was able to go back to sleep 3 times last night after not being able to do it at all for a week and the two weeks prior to that it was taking her at least 3 hours to get back to sleep. 

She is a different girl this morning.  She is more herself, though she is still way behind on sleep and of course still didn't get enough last night but she got more sleep last night than she has for the past 3 or 4 nights combined. 

Thank you, thank you for your prayers and support and please keep praying for Megan and for all of us. 

On a side note Sam spent the day with my good friends yesterday while we were at the doctor's office.  They ended up keeping him until bedtime so that I could get some sleep when we got home.  Sam had a blast and got TONS of much needed attention. 

June 12 email regarding seizures

Email sent June 12:

Megan has been having a difficult time sleeping lately.  It started about 6 weeks ago with her waking up multiple times a night for a few seconds and then going back to sleep.  It progressed to her also waking up once or twice a week and staying awake for 3-4 hours at a time.  The past 2 weeks she has been having difficulty going to sleep (she would fall asleep and immediately wake up crying) and then also waking up for several hours.  Four days ago she started waking up at the 2.5 hour mark and screaming/throwing herself around her bed and then never going back to sleep. 

On Sunday night I was able to rock her to sleep at 5:30 am and she slept for 30 minutes before my moving around woke her up.  Monday night Will had the honors of staying up with her all night and last night it was my turn again.  She woke up at the 2.5 hour mark (9:30) and was still awake at 3:00 am.  She was going through cycles of trying to go to sleep and just flipping out.  We were trying to get her to work through it on her own so that is why I waited so long to intervene.

At 3:00 am I got Megan up and brought her downstairs to try to rock her to sleep.  I successfully got her to sleep at 3:45 am and what followed was the most rewarding and difficult thing I have ever done.  The instant Megan fell asleep she started twitching in her arm and it woke her up.  I was able to get her back to sleep by continuing to rock her.  Her arm was twitching a little bit and then her leg and then her head would twitch back and forth.  This continued for about 30 minutes until she had a big incident.  She gasped and then her entire body went stiff and jerked for 3-5 seconds; and then she was awake.  I was able to reposition her so she was comfortable and rock her back to sleep in just a couple of minutes and then it started all over again. 

I knew what was happening.  It was obvious what had been happening to her for who knows how long.  She couldn't get to sleep because her body would twitch and wake her up.  She couldn't stay asleep once she had a big jerking episode and then once awake she couldn't get back to sleep.  Our daughter is having seizures in her sleep and they are keeping her from getting the sleep she needs. 

I managed to get her 1.5 hours of sleep in my arms.  I felt honored to be able to help her get some of the sleep she needed; and yet her seizing in my arms was the most difficult thing I have had to endure as a mommy.  My instinct was to try to hold her tight so she couldn't jerk around and to rock and rock and rock so that maybe she wouldn't twitch at all.  At 5:30 she jerked awake and daylight had started to show through the window we were sitting by and she decided it was time to get up for the day. 

I took her up to our bed to lay down with Will for a little bit while I filled him in on what had just happened; and then I laid down to get 2 hours of much needed sleep.  I don't remember ever being good at pulling all-nighter's and 38 years old is definitely not a good time to try it again. 

First thing this morning I called her neurologist office and they moved her EEG appointment from Monday to this afternoon.  They originally did not think that seizures would be what was happening since Megan isn't having any while awake but they scheduled the appointment just to be sure. 

I will update everyone when I have more information but we in the mean time we covet your prayers for Megan and for our family.
 

Proud of herself and Ortho appointment update

At the end of school, a couple of weeks ago, I was talking to Megan's teacher and she told me that Megan had taught one of the other little girls in the room to play with dolls.  Megan was the only child who would play with the dolls for most of the year but the last couple of months she taught another little girl so they could play together.  I was telling Will about this while Megan was with us and she got the biggest smile on her face and then clapped for herself.  She understood what I was telling him and that we were proud of her so she was proud of herself.

Megan had her follow-up ortho appointment last week to look at her trigger finger and her braces.  Unfortunately her finger has gotten to the point of hurting her and is getting stuck worse and worse so we were informed that surgery was her only option.  We were told we could wait a couple of months but since it is hurting her we decided to do it as soon as possible.  She is scheduled for June 20th.  The surgery is normally done with just a local but since Megan won't hold still they will have to put her under.  Her finger will need to remain bandaged for 3-4 days or until she manages to get it off.

The doctor was impressed with Megan's ankle alignment.  He said that when she outgrows her current pair of orthotics that we will downgrade her once again, this time to a pair that goes below her ankles so that all it is doing is keeping her feet straight.  After that pair she should be done with the support all together.

More parks and water

Two weekends ago we took the kids to the local science museum.  They have an indoor play area for kids, a huge metal drum/chimes area outside and a train.  Megan had a blast standing and hitting the drums with her stick and of course she loved the train ride.   We went back to Pullen Park on Labor Day and when she saw the carousel she let go of Will's hand, walked to the railing and started pointing at it to say she wanted to get on.  

This past weekend we found a park that is closer to home than Pullen, has a lot more rides and was seriously less crowded.  Megan loved, loved, loved all of the rides: train, carousel, airplane, cars and boats.  She would fuss when the rides stopped and she definitely didn't want to leave.  We will be spending more time at this park for sure.

We had a neat experience at a local park.  A little girl saw Megan and came up and asked me if she went to Pathways Elementary because she recognized her.  She said that she likes to push Megan around in the car on the playground.  It was very sweet.

Thursday was Megan's end of school party and a little girl who had been out of school for a few weeks due to being in the hospital was back.  Megan was so happy to see her she kept trying to give her kisses.

Now that it is warm out we have been spending a lot of time playing in the water table and Megan loves it so much that she won't sit down.  She stands at that table so long her little legs start trembling and I have to force her to sit and if I don't take her inside she immediately stands back up.  This is great work for strengthening her legs.

Festivals, counters and new SLP

Last Saturday we went to a local festival and the only thing they had for kids were giant inflatables.  I thought Megan would enjoy them but we didn't even get a chance to check them out because she was completely freaked out by the noise of the generators.  I gave her ticket away to the first person I saw getting in line to buy one.  

She did well with picking her own strawberries -or at least she liked getting to eat them.  I made her stand and get the berries but she preferred it when Will was holding her upside down leaning over to get them. 

She enjoyed the mini-state fair festival we went to the next day.  She stood at the table full of corn kernels and played for several minutes.  She loved getting to wash her hands at all of the stations because they had kid height sinks.  She enjoyed her pony ride but wanted Will to let go of her - I am sure she feels like a pro on a horse and she didn't need daddy's help staying on.  

Megan is still walking when she wants to and not walking when she doesn't.  She is however, playing in out kitchen a ton.  She pulls up at the table and or counters and will walk all around the room trying to reach stuff.  I try to keep stuff I don't want her to have out of her reach (though I fail sometimes) and I put things that are enticing where she can get them.  

This morning Megan had her first session with her new SLP (speech language pathologist).  It was time for a change for her and our wallet.  The new place takes our insurance and will give us a discount once her sessions run out.  It is also 18 minutes from home instead of 45.  So, her session this morning was just a get to know you session but I can already tell this is going to be so much better.  The therapist's personality is a much better fit and her style is too.  Megan was so engrossed in what was going on that she didn't take her glasses off until 2 minutes before the session was up; normally that is the first thing she does to a new person.  

The jig is up!

The most challenging part about parenting Megan is always questioning whether she comprehends what we are telling her to do.  Well, the jig is up.  We (Will and I both) have felt for a very long time that she understands everything we say.  It has always seemed that way to us.  I question it when no matter how many times you correct her she doesn't stop a behavior; I typically fell like an ogre after butting heads with her and always go to the "what if she doesn't understand me, what if I am wrong" guilt trip.

I am not saying I won't find myself on that guilt trip again, BUT I now have some pretty concrete evidence that she is understanding and she is just choosing to ignore or fight, etc unless she is properly motivated (like everything else).

Yesterday afternoon she managed to get completely undressed when she woke up from her nap.  I went up to put her clothes back on her so that she wouldn't take her diaper off and she was so happy and loving that I didn't want to put her back down for the rest of her nap time so I got her up.  I sat her beside me on the couch and put the iPad in her lap.  I told her that if she took her glasses off I would take it away from her; she gets really excited and pulls her glasses down when she is playing with it.

So, she played for a good 10 minutes before she touched her glasses.  When she pulled them down, I grabbed the iPad, locked the screen to get the music to stop and put it on the other side of me.  She started complaining and I said "mommy said if you didn't have your glasses on you couldn't have it".  She immediately started looking around at the floor in front of her and looking on the couch for her glasses.  I touched them to show her where they were and she yanked them off her head and put them back on correctly and then said "mor" to get the iPad back.  I told her that was a good job and gave it back to her.  And then I thought....what the heck!   She clearly understood what was necessary to get it back.  About 10 minutes later she pulled her glasses down again (she reached up to take them off a few times before then and stopped herself).  I didn't say a word, but reached over to take the iPad and she immediately put the glasses back on and said "mor" before I could even get it away from her.

Her goose is cooked. She was motivated to do what I said, even motivated to do it the second time without instruction, so she obeyed.  Motivated!  If only there was a way to motivate her to obey every time, or at least some of the time with other things like not throwing toys/food, or not grabbing Sam's hair, etc.  We can't tackle everything at once, that wouldn't be fair; but we are going to start standing our ground one behavior at a time because I know she understands.

Life

In one of Megan's bibles there is the story of baby Isaac.  She loves the picture of baby Isaac.  She will now open the bible and flip through the pages until she finds it; and if she goes too far she knows it and will let go of the pages and start again.  When she finds him she slaps her hand down on the page, points to him with her other hand and smiles.

Last weekend we took the kids to pullen park.  It is in Raleigh, so a little bit of a drive, but it has 3 kid friendly rides.  We want to start exposing Megan to age appropriate stuff and boy did she love it.  She played on the swings, see-saw and the sand box while we waited for the rides to open.  First was the train - it is a little train that goes all the way around the park.  She sat beside me on the bench and had so much fun. She was kicking her little legs and clapping and smiling.  Sam was sitting beside Will and crying for the first half.  Next up was the boats attached to a pole in the center that go around in a circle.  Once again Megan had a blast - she was playing with the wheel and the flag and trying to get Sam to play with his wheel.  Sam asked to get out every time they passed us, but he wasn't crying.  Finally, after a snack break, it was time for the carousel.  We put both kids on a horse that went up and down.  This was definitely the fasting moving carousel I have ever seen.  Megan was so very happy and after I talked Sam down he was tolerating the ride.

I took the kids up to see Will last week just before lunch.  This is the first time we have been since Megan has been taking more than just 1-2 steps.  She held onto our hand and walked all over the place saying hi to people.

She loves to stand up at Sam's tray when he has food.  The other morning Will was feeding Sam lunch and Megan went over to them and was taking cheerios from his tray and feeding him; though she would occasionally tease him by putting it up to his mouth and then putting it into her own.

She has found her "b" sound again.  She started making it again this week.  The first time was on Wednesday morning.  She was eating breakfast and heard Sam and said "bababababa".  Will said it sounded an awful lot like bubba.  Then in speech later that same morning she said it for ball.

I got to watch the coolest thing yesterday when I picked Megan up from school.  She was climbing the stairs and sliding all by herself.  She would hold onto the hand rails, walk up the stairs, get down and make her way to the slide and then slide.  I wish I could have recorded it - it was a wonderful moment.  We will definitely find our way to the school so she can repeat this while I have my camera ready.

Whistle blowing

Megan's speech therapist recommended that we teach her to blow so that she can master the "h" sound, and others.  I have been working with her for a couple of weeks just showing her how to blow.  Yesterday the bag of whistles I ordered from a therapy site arrived.  The bag contains multiple levels of whistle - meaning very easy to blow all the way to one that you really gotta blow hard to get it to work.

I worked my way through the bag and found the 3 easiest whistles.  She tried yesterday but didn't manage to do any actual blowing.  This evening though she blew one of the whistles hard enough twice to get a sound.

Food swiping, communicating, blocks and annual neurology appointment

On the rare occasion that Megan finishes her lunch before Sam I clean her up and walk her into the living room right past Sam's chair.  She has mastered the art of walking and swiping food from his tray.  She never misses a step, slows down or anything.  She just keeps going for a few steps, then sits down and eats her prize.  The other day she swiped Sam's last bite of food.  Sam started saying and then screaming "have it" while pointing at her and looking at me.  (I taught Sam to say have it as a way to ask for something.)  I couldn't help but laugh - there was no having it back for Sam.  She was chewing and swallowing.  I tried to convince Sam of this but he was sure she could spit it out for him.

Yesterday she worked really hard at school, walking a lot.  When we got home I made the kids lunch and put it on the corner of the table, while I rounded them up.  Right after I put the food on the table something distracted me for a few seconds and then I heard "num num yum" very plainly I knew what was happening.  Megan had pulled up on the table, grabbed two pieces of her sandwich (I cut it in 4 pieces) and had already shoved one entire piece in her mouth and was chowing down.  She was so happy with herself and she was seriously enjoying her food.

Megan is making great progress with communicating.  They are using a placemat at school with pictures that represent "more", "finished", "drink" and "eat".  She has been pointing to the more picture to get more snack and/or saying the word more.  She has also been telling them when she is finished or wants a drink.  One of her teachers made us a duplicate placemat and we started using it at home a couple of days ago.  She is telling us more and finished (sometimes) but she is so pleased with herself when she gets what she asked for that I imagine she will flourish with additional picture boards.

While we were waiting for the doctor to come in the room on Wednesday I was playing with Megan.  They had very small blocks and Megan stacked 5 of them.  She consistently stacked 4 blocks but got 5 twice.  Yesterday she was playing with our, much larger blocks at home and was stacking 3 consistently.

Megan's neurologist asked us to make her an appointment once a year after her last appointment (the one with the MRI).  Megan saw her on Wednesday of this week.  I believe the words she used were "thrilled, amazed and wonderful" among others.  She was completely thrilled with Megan's progress this past year.  She said it was like looking at a different child because Megan had progressed so very much.  She said that she was prepared with a list of things to instruct us to do to help Megan but that there was absolutely nothing we weren't already doing.  At one point she sounded almost giddy with Megan.  She wants to see her back in another year just to check her progress, and I am sure she will be just as astonished at our little miss at that appointment.

Speech progress.....her first official word

Megan has been doing great with her speech.  She is babbling a lot and has so many new sounds it is difficult to keep up.  She was frustrated at Will the other night because he wouldn't give her what she wanted and she just started telling him "what for" and included in her little rant was a very clear "da da".

She has now on a few occasions said the word "more".  She said it to me last night when she wanted another strawberry and she is saying it at school as well.  She is using it properly and when someone is holding out on her waiting for a response.

A little regression due to a lot of sneezing (I think)

Megan is still not walking as much as she was a couple of weeks ago.  She was doing so great before the cold and hadn't gotten her groove back yet when she started having allergy issues.  She has been pretty miserable the past several days, but I think we may have found a combination of medicines that are working for her.

She gets eye drops twice a day, which she isn't fond of, but it helps her eyes not to itch and therefore she isn't clawing at them like she was.  We originally tried Claritin for her but it didn't work so she is on day 2 of Allegra and it seems to be helping.

On a side note - I think her final 2 year molar is here to stay.  She still has the tiniest little piece that hasn't broken through but the rest hasn't gone back in.  I am so thankful that she will finally get a break from teething.

Attack of the allergies

Megan has been sneezing for a few days, off and on, but until yesterday she didn't really have any other symptoms.  She had been a little less energetic for a couple of days but that was it.

Yesterday she would have a little bit of a runny nose every couple of sneezes and her eyes started itching.  She was rubbing her left eye a lot.  This morning she was still going after her left eye but pretty much leaving her right eye alone.  When I got her up from nap she had rubbed her right eye so much that her entire eyelid was bright red.  She has horrible dark circles under both eyes and she was rubbing them like crazy.

The doctor's office told me about an eye drop that would help.  It took about 15 minutes for it to kick in but then she didn't rub her eyes anymore.

I hate that she couldn't tell us how she was feeling so we could help her sooner.

Maybe, just maybe, her 2nd molars are in

Two nights ago Megan had a very rough night where she woke up every hour or so and then went right back to sleep.  So yesterday afternoon we checked her tooth and the final corner had come in.  So the final portion of her final 2nd year molar is through.

She is still in bed so I haven't checked this morning, but her teeth have a habit of going back down after they come through so who knows what it will look like today.  I sure hope she is done with them because she started cutting her 2nd year molars on April 8, 2012.  That is more than a year that she has been suffering through getting these in.

Crib standing practice

Yesterday Megan didn't sleep during nap time because she was too busy practicing standing up in the middle of the crib.  She started out putting her head down so she was standing in an upside down V, but she eventually picked her head up and was able to stand up.  She did pretty good with it.  This is exactly what happened when she learned to sit up, and when she learned to pull up.

Reducing time at pre-k

We made the decision this weekend to pull Megan out of school on Mondays and Fridays.  She will continue to go on Tuesdays and Thursdays when she receives all of her therapies.  There are have been two children added to her classroom, in addition to one of the children who was there getting very ill.  The teachers are spending their time running around trying to manage the chaos and Megan wasn't getting any benefit from being there.

In fact she was being carried around most of the day just to keep her safe.

I am extremely excited to have her home with me tomorrow and am looking forward to getting to spend more time with her.  I have created some task boxes to work on her fine motor, sorting, color recognition and manipulation skills.  I will also be requiring her to use her words and sounds to get what she wants and of course I will be ensuring that she is walking everywhere she goes.  I know that she will be getting way better attention here and that both Sam and I will be thrilled to see her more.

Walking, starting to talk and more

Megan has been doing a great job with walking on various surfaces - grass, mulch and the very thick dirt at the barn.  She isn't sure of herself but when properly motivated she will start moving.

She is babbling all the time now and is continuing to make new sounds.  She will now say "momma" on cue and will say it to get my attention.  She will say "mo" for more when she wants more music or cheerios.  It is very exciting to see her starting to talk.  Her therapist said that her last session was the best one ever - she has really started participating and responding well.

She is doing really well with getting dressed and undressed while standing up, even stepping out of her pants/shorts.

Megan is doing the motions for pat-a-cake.  She will just start doing "roll it up" and then "throw it in the pan".  She will even do the motions when Sam is the one singing the song.

A couple of weeks ago, when she was sick, we went to the store to get a natural cold remedy to try to help the kids.  While we were there we saw one of Megan's classmates.  She got so happy to see Holly, she waved hi and clapped and smiled.  It was so sweet.

Megan has figured out the sit-n-spin and is so proud of herself.  She is also able to stand up using a flat surface (side of fridge/cabinet/wall).

First hair cut

I have a whole list of updates that I need to get done but for now....I gave Megan her first hair cut today.  She needed the ends taken off the back and boy did it make a difference.  Somehow it looks like I cut her bangs, etc.  She looks so cute.

Fill in the blank and walking

Megan has mastered the "fill in the blank" game.  I can sing something to her and then the next time leave off the last word and she will fill in the blank.  She doesn't always do the correct sound but she tries.  I will sing "baa, baa, baa, b" and then the next time leave off the b and she will do it for me.  Or sometimes she throws in a different sound, but the good news is that she has the concept down.  This is a good step in the direction of mimicking new sounds.

On Tuesday when I picked Megan up from school she was a walking, walking, walking girl.  She walked out the door of her classroom a few steps, turned around and went back in 3 times.  When I finally got her going the right direction she walked all the way to the front door of the building which is at least 250 feet of walking.  I am sure she walked closer to 300 feet because she kept turning around and going back the other direction.  She would go up to doors and knock, she pushed the button on the water fountain, she played ring around the pole.  It was crazy and fun to watch.

She has gotten very good at holding onto something, squatting down, picking up something and standing back up.  Yesterday she held onto her therapist hand and walked around the arena picking up Easter eggs with Sam after her horse riding session was over.  She did great, even on the uneven dirt.

Stay at home vacation happenings

Super long two-week update.

Hippotherapy - Last week during Megan's session I got to be her side walker because there was a volunteer who didn't show up.  Normally this would have been a disaster but since Will was there too and could hang with Sam I was free to do it.  I had so much fun, it really still makes me smile when I think about it.  Megan is doing great on the pony.  Yesterday she had so much fun that when it was time to leave she was trying to put her helmet back on so she could ride some more.  She is now standing up in the stirrups by herself, throwing balls overhead into the basketball goal, getting items out of the mailbox, etc...all by herself.

Speech - Megan has started "filling in the blanks" for me.  I sang part of the alphabet phonics song and she did the "m" part for me.  She also said moo last week for her speech therapist during the old macdonald song.  Her therapist said she can hear all of the vowel sounds now when Megan is babbling.  During yesterday's session she did incredibly well with imitating gross motor movements, even mimicking double-taps with double-taps instead of just single ones.  She is blowing kisses like crazy, waving good-bye and raising her arms during diaper changes.  Yesterday she was getting frustrated with having to perform to get to play with a toy so at one point she crawled to the door, said "mama" and hit it to indicate that she was done and she wanted me.  Her therapist was very impressed by this but told her she had 15 more minutes of work to do.  Megan's response was to get back to work and make the sound she was being asked to make - I was impressed by that.  Megan is now doing the sign for book on a regular basis and it is so cute with her little hands

Walking - Megan has continued to walk when asked, though the past week has been less because I hurt my back so I can't help/facilitate it for her.  Her PT at school was thrilled with her work today - they worked on her standing up from a low bench by herself.  She said that they would sing a song and when Megan sat down she would stop singing and tell her she had to stand up to hear more and she would do it.  She was also standing for 15-20 seconds before sitting back down.  Megan has been standing at home a lot at her kitchen and Sam's tool bench.  She will stand and play and when she drops something she is holding on with on hand, squatting down to pick up the toy and then standing back up.  I thought this was great since she was instigating on her own and her PT was thrilled to hear about it saying it was a good sign too.  Three times in the past 2 weeks Megan has walked to complete strangers.  The first time she climbed out of my lap onto her feet and walked across the room to get to someone.  The second and third times she let go of Will's hands to walk to someone.

Mall Fun - twice during our vacation we took the kids to a mall.  The first time we took them to the ride on toys that move back and forth a little bit.  We were able to put them side by side in a race car and they had a blast.  Every time it would run out Megan would say more in sign language and then clap.  The second mall has a toddler climbing area.  Megan wasn't into climbing - there were way too many kids there, but she loves to watch other kids.  She moved around a little bit until she found her spot.  She sat beside a tunnel so she could see through it and watch kids running by the other end.  At one point I sent Sam through the tunnel to her and she screamed and squealed with delight.  She would also do a little dance and clap when she saw him run by the end of the tunnel.  There was a little boy who she gave kisses to and he returned the favor.  At one point she was walking holding onto Will's hand and the boy started pushing on her tummy.  She kept walking, though sideways to get away from him but she was smiling and laughing the whole time.

Miscellaneous - two of our male neighbors have come by when we were playing outside and Megan wanted both of them to hold her and didn't want either of them to put her down.  A couple of days ago she learned how to tease someone.  Will had been getting her ready for bed and she grabbed her finger brace and moved away from him.  He told her to give it back and she held it up to him and right before he grabbed it she pulled it away and laughed.  She did it several times.  Then yesterday she teases Sam with one of the screws from his tool bench.  This morning when Will pulled into the school parking lot Megan clapped.  They were in the truck so she was high enough to see where she was and she was happy to be at school.

Walking update brought to you by the letter G

Megan has been doing really well with her walking, especially in the evenings with daddy.  She loves to push him around the house by putting her hands on his thighs and he walks backwards - though most of the time she is barely touching him.

She has been working hard on learning to stand up without pulling up.  Yesterday she did it 4 times on her own, meaning I didn't help her.  Tonight for the first time she initiated it and got more than 75% of the way on her own and I helped her balance to finish standing up.  The first time I had positioned her to stand up and she did it and then halfway to Will she fell down.  She then got back in position and started to stand up.  This was the first time she didn't just do her crawl/hop thing the rest of the way; but instead tried to stand up to walk again.  She repeated that a few minutes later as well.

Last night Will was holding both of her hands and they were walking extremely fast around the house - as fast as Megan could go without actually running.  She was squealing and having a blast.  At one point she was facing him and they walked to the laundry room.  Instead of turning around to walk back out of the hallway she started walking backwards.  She did it several more times - walked backwards while holding onto our hands.

Tonight while she was going back and forth between us I sent her to Will.  She walked all the way across the room, stopped about 2 steps from Will, turned around and walked back to me.

As promised this update has been brought to you by the letter G.  Megan is now making the G sound.

Walking, catching and feeding herself

Megan has continued to walk and walk and walk.  She will walk to anything she finds enticing.  She hasn't figured out how to stand up in the middle of the room yet, though she does try.  She will walk between the furniture in the house if there is something that she sees that interests her.  This morning after school she walked from our front door to the coffee table, which included having to turn a corner.  She put her hands down twice on the way but she did so amazing.  That trip is about 40'.

Last week she started catching her house shoe.  She was standing in her bed and I was throwing it at/to her and she would let it hit her in the face and then she would laugh.  At one point she just started catching it - sometimes with both hands and sometimes with just one.

She has been doing great with feeding herself and not throwing food.  She is pretty much to the point where she only throws food when she is done with it, meaning she is full or she is ready for fruit.  We are working with her to tell us she is done instead of throwing it but this is far, far better than when she would just throw everything that wasn't in her mouth.  She is also doing great with not throwing her cup and letting it sit on her tray.

Amazing 3.5 days and now back to school

Megan is doing amazing with her walking.  It started on Thursday when we got home from school and it hasn't stopped.  I was/am very nervous that she is back at school today.  Obviously they want her to walk too, but it is different.  There are others in the classroom and though I am sure they will work with her to get her to walk when they are ready to transition to a different area, it will be very different from me having her walking constantly.

This weekend she walked all over the park and playgrounds that we went to - she held our hand to walk on the mulch but she didn't really use it - just wanted the security.

Independence = JOY

Megan has always been a happy and joyful little girl.  Watching her this morning when she chooses to walk somewhere other than where I tried to get her to go - she is so very joyful.  She is still walking everywhere - I am still enticing her for the most part; but every once in a while she decides she wants to go somewhere other than where I am directing her and her face just beams when she does it.

I have been giving her breaks, 5-10 minutes to just do what she wants and though there is very little walking during this time, there is a lot of standing and playing with Sam.

It is possible that it will stick

Yesterday Megan was in the mood to walk.  She tried to dive out of my arms on the way into the school so she could use her walker.  If it is cold I wait until we get inside for her to walk and she didn't want to wait.  She walked all the way to her room, which took forever because she is like the school ambassador.  She stops and chats with everyone, she tries to follow the older kids when they say hi to her, she claps for the police officer.

Anyway, when she got into her room her teacher picked her up and Megan wanted back down immediately so she could walk around the room with her walker.  They said she was that way all day.  She even walked to the office and back just holding one hand at one point.

I let her use the walker to get all the way to the car when I picked her up and then I parked in the driveway instead of the garage so she could hold my hand and walk to the front door and into the house.

Once inside I put some enticing toys on various surfaces throughout the living room and she walked from surface to surface, even turning around and letting go by herself.  She was ready to go.  She walked across the house and to all kinds of places with just me following behind her.  Yesterday before lunch was like the Thursday 3 weeks ago.  I was concerned that she would wake up from nap and be done with it like she was last time, but unfortunately she wouldn't go to sleep at nap time.  She was so amped up, she was squealing and laughing for her entire nap.

When she got up, though she was tired, she walked around for 2 hours until dinner time.  She was so happy to be walking where she wanted to go and she did great.  So, this morning after she slept it was time to test her again.

She is still walking everywhere.  Sometimes she acts like she needs me there and will lean back but if I tell her that she has got this and she doesn't need my help she leans forward and takes off.  It is 9:15 and she has walked since she finished breakfast 1.5 hours ago.

New skills at hippotherapy

Megan did awesome at her therapy session yesterday.  She is overhand throwing balls into the basketball hoop like crazy.  They added stirrups to the horse so she could stand up to reach toys that were high up.  Unfortunately the shortest setting is still too long for her so she can only stand up a little bit, but she did excellent.  After showing her once what to do the next time they approached the pole she stood right up and grabbed the toy.

They also added reins so they could play red light, green light.  When the therapist said red light Megan pulled on the reins and the horse would stop.  She thought that was funny but didn't want the horse to stop so she would drop the reins instead of pulling them.

IEP meeting

This afternoon I met with Megan's teacher, her speech therapist, the head of the program and the Occupational therapist who recently evaluated Megan.  The meeting was to discuss the results of the evaluation and to officially add OT services to Megan's schedule.  It was also to discuss ESY (extended school year) for Megan.

Overall the OT rated Megan at 18 months for her fine motor and self-help skills.  About half of her goals for the next 3 months Megan can do but she didn't demonstrate them or she is having issues because of throwing.  For example, eating with a spoon.  Megan can do this but after each bite she throws her spoon so we don't let her do it by herself at home and until this week they had never even tried at school.  They also want her to be able to pull off and put on her pants - which she can absolutely do; it is the reason she has to sleep in pjs; but since I have been tightening her waist bands with my little gadget I guess it is too difficult for her to do.

She will start receiving OT twice a week just like her speech and PT.

As for ESY, she qualifies for PT and speech because she has emerging skills that they want to take advantage of.  She will go to school twice a week for 4 weeks in July and be there for 1 hour each day to receive 30 minutes of each therapy.  We had the option to decline these services but we want her to continue to receive the assistance.

February 9th Measurement

In looking at the kids the past couple of weeks it seemed like they had grown again - or were still growing so we measured them this weekend.

In 42 days since we least measured her Megan has grown 1/2" making her 34 1/4 inches tall.  So she has grown 1 1/2 inches since her growth spurt started just after Christmas.

Eye appointment

Megan saw her eye doctor yesterday and it went as expected.  Her eyes are perfectly aligned, she needs to keep wearing her glasses until she can complete an eye exam.

Sam got another free eye exam while we were there and he totally lost his marbles at the lights being turned out.  The nurse had to come get him and take him for a walk.  Megan was doing amazing with the appointment until Sam started freaking out and then she thought about it and decided if he was so upset then something must be wrong and she started trying to get away from the doctor.

Finger update

Megan saw the doctor yesterday to check on her finger.  I told him there hasn't been any change since her last visit.  Her finger still gets stuck and she cannot physically unstick it by herself - meaning she needs to use the floor, table etc to force it straight again.  We talked for a long time and after consulting with the hand surgeon to verify that our treatment plan was correct we decided to keep things the same.  She will continue to wear the brace when she is napping or sleeping.

He said it could take up to 18 months to fix this, though we are certainly praying for a much speedier recovery.  As long as nothing gets worse, meaning she isn't in pain and her finger isn't unable to be straightened, then we will keep this plan.  If something were to change for the worse then we would need to meet with the surgeon to discuss intervention.

Switch has flipped and corner has been turned

Megan has one more corner to turn before she is 100% independently walking but man is she close.  She did amazing at school today and since we have been home I have been following her all over the house; meaning I help her stand up and then she is just walking everywhere.  She is turning when she wants to change directions and walking to places and items.

My sweet little miss is seriously walking around like she owns the place and let me tell you for the small fee of a smile she can have the deed.

Great morning with speech and walking

Yesterday Megan had another wonderful speech session.  She mimicked new sounds (ya-ya) and did everything asked of her.  She sat, engaged with the therapist, the entire session; transitioning to new tasks when ready.  

When we arrived at the office I tried something new - something I have been waiting to do for a long time.  Instead of carrying Megan into the office while Sam walked holding my hand.....I had one kid holding each of my hands.  I walked into the building and down the hall to her therapy room and then back up the hall and to the car with Sam holding my left hand and Megan holding my right hand.  This was a huge moment for me - I was so proud of Megan for being strong and stable enough to do this while Sam was there and proud of Sam for being patient.  

On the way home Megan was using her sounds to get more cheerios - I would give her different sounds to make and when she made them I would refill her cheerios.  

Final 2-year molar trying to make an appearance

Megan has been struggling the past 3 nights with her final 2-year molar.  She is crying, a lot, all night long because she is in pain and can't sleep.  It is very sad because there is nothing more we can do for her.  Last night she didn't want to eat her chicken pot pie because it hurt to chew.  We ended up giving her a bunch of different soft items just so she could eat.

Today I made her banana "ice cream" to help numb the area.  I would put the spoon as close to the tooth as she would let me.

Concern about possible regression due to therapy walker

We have been concerned that Megan was regressing because of the therapy walker.  She started using it on Tuesday at school and then again on Wednesday evening at home.  Thursday afternoon was the first time I tried to get her to walk somewhere just holding one hand and she wouldn't do it, she grabbed my hand with both of her hands and I had to convince her to let go.  Then on Thursday night we tried to get her to walk to us from the walker - meaning she used it to get close to us and then we tried to get her to let go and walk to us but unless we forced her to let go she wouldn't.

Will and I talked about it A LOT.  I talked to all kinds of people about it trying to determine what we should do.  We continued to let her use it to walk around everywhere because we do believe in the premise of it teaching her that she can get from Point A to Point B by walking and that it is fun - and she lights up when she is doing it.

Today we even took her outside with it and let her walk around the driveway and yard with it.  We planned a trip to the library for the purpose of letting her use it somewhere other than just doing laps around the house.  Previously we were holding her hands to walk into and around the library.  She loved getting to walk to/from and around the library.  She loved having the ability to walk down a row and reach up to grab a book.

After dinner and Sam being put to bed it was time to work with her.  We usually use this time at night to work with Megan so that Sam isn't feeling left out and so he isn't in her way (he loves to run in front of her).

Tonight I sat in front of the couch and Will was in his chair and she walked back and forth between us without us having a toy to entice her.  She did it just for the sake of walking; and she did it VERY well.  She was incredibly stable and balanced.  She would start to fall over and was able to correct herself, get steady and then take off again.   She went back and forth between us 16 times.  Halfway through I started having her stand up from her knees when she went from me to Will.  I was holding her back pockets and she was standing up by herself - meaning I wasn't lifting her.  I was steadying her so she wouldn't fall on her head but she did all the heavy lifting by herself.

At one point Will left the room and Megan was walking from me to his chair.  Twice she got in position and started standing up from her knees and I would grab her pockets to help her at the last minute.

When Will came back we were playing kick the ball in the entryway.  I stood her up to kick it to him and instead she took off walking to him.  When she got close he started backing up and she walked almost the entire length of the entry all by herself taking 25ish (I started counting late) steps.  This is by far the most she has ever taken and she was perfectly steady.  Watching her was like watching Sam walk - she was just doing it.

We tried to repeat this a few times but she was very sneaky and would manage to get hold of one of Will's fingers and then she would squeal with laughter the rest of the way as Will kept backing up.

Tonight was amazing to watch and so much fun.

Vogue

Megan continues to love walking around with her walker.  She just beams and claps and has such a great time.  She started watching herself in our appliances a few weeks ago and posing while she is doing it.  She will do the sign for love and look at herself from all angles.  She claps or puts her hands on her head and face.

Yesterday while standing at the oven with her walker she started posing.  She was twisting and turning so much she knocked herself over - though she was able to recover without hitting the floor.

The last three days of amazing growth and maturing

At school today Megan stayed on her feet almost the entire 3.5 hours.  When I dropped her off she was standing at the water table, she stood and played there for 32 minutes.  I told them that if they will put the walker behind her she feels secure and will stand and play and boy did she prove me right.

They said immediately after being done with the water table she went to the craft table for more than 20 minutes.  Because she is confident in her standing her attention span with tasks skyrocketed.  Her teachers are thrilled about her walking/standing and incredibly increased time at tasks.  She walked all over the school today and she is so stinkin cute that everyone fawned over her, which she loves.  On the way home her entire class walked with her.  It took quite awhile because she kept stopping to clap for herself.  She is having so much fun.  

Yesterday was Megan's speech session.  I hadn't said anything to her therapist yet but we were seriously considering a change.  Well...after yesterday we will be staying put, at least for now.  Megan had an amazing session.  She made the sounds she was supposed to make, she imitated actions, she was even saying "mmmm" when she wanted music without being prompted to.  When the therapist would remove the toy she would say "mmm" immediately to get it back. 

After her day with the walker and then the amazing speech session I decided to see if she would feed herself lunch.  I tried within the past week to get her to hold her own sandwich and she wouldn't even touch it, but yesterday was a new day.  She fed herself the entire thing without throwing food once.  She even asked for more when she was finished.  She did great with her snack, ate it without throwing and then again at dinner.  So on day one of trying again she did all three meals perfectly.  

This morning she did knock her bowl of peaches off of her tray but I am not sure she would have had a problem if they hadn't been in a bowl.  She fed herself lunch again today.  She did throw one piece of food but didn't repeat that behavior.  

Walking to her classroom

I have so much more to catch up on but for now just a little update.  Megan used her walker to go down the hall and into her classroom this morning.  She wanted to get down and use it immediately but I made her wait until we were in her hallway which is still probably about 50' long.

She did awesome.  She kept stopping, not because she was wanting to sit down, but because she was observing everything.  A kindergarten class walked by and she was mesmerized   She watched them and then turned her head and kept looking until they were gone.

Therapy walker

Megan's PT at school (the only one she is seeing at the moment) asked me how I would feel about Megan using a walker.  I told her that any tool she thought would assist Megan was okay by me.   Yesterday at school the walker was introduced to Megan and after a few minutes of adjusting to it she was off and moving.

The walker looks just like one you would see an elderly person using, except that the crossbar goes behind Megan.  That little change is what makes this work so well for her.  When she tries to sit down she feels the bar behind her and decides to keep going.

At school she walked back and forth across the room a few times, twice after I got there.  Her PT told me I could bring the walker home as long as I brought it back the next day.  I didn't realize that Megan was the only one using it so I didn't bring it home yesterday because Megan doesn't go to school on Wednesdays.  Debi brought the walker to me on her way home this afternoon and we immediately got Megan in it to get moving.

Megan walked back and forth in our entryway to get to me or Debi.  I had her walking a few times after Debi left while I was making dinner and then she walked to daddy when he got home.  When it was time for dinner we had to use the walker to get to her chair and then from her chair to the living room again after dinner.

Megan then used the walker to walk the length of our house - from the coffee table to the oven and back a few times; then the real fun started.  She walked to me at the front door and then back to daddy who was as far away as he could get.  She repeated this so many times I stopped counting at 10 trips and she wasn't sitting down at all.  She would help turn the walker around to go the other way.  One time she left the walker to play at the window and then stepped back to it.  I estimate that she was walking and standing for at least 10 minutes.

We played chase with her like we do when she crawls and she chased me and Will and Sam across the room.  She went to Sam and gave him full embrace hugs and kisses for a long time.  She walked to her kitchen and then stood there and played for the longest time she has ever done.

She is so happy to be standing/upright and be able to look Sam in the face.  She was loving being able to walk where she wanted.  I have no idea how long it will be before she is comfortable leaving the walker for good but she knows she can - she let go and took a couple of steps tonight already.

So excited to be back at school again

Megan was out of school all last week and yesterday due to the cold a classmate shared with her the previous week.

This morning on the way to school she was so excited.  I used to have a blue film in her window to prevent the sun from being in her face, but I removed it recently and haven't replaced it with anything yet.  This morning she saw cars going by and started blowing kisses to them.  I am not sure if she never noticed before because of the film or if she is just becoming more aware.

When we got to school she was so happy and this time didn't snuggle on me at all as we approached her room.  She did a little dance when her teacher took her from me and gave her hugs and kisses.  She kissed me good-bye and was giggling when I left the room.

Sharing with Sam....or maybe not

This morning during our now daily (helps with Megan's congestion to be upright in the car) Cheerio ride Megan shared hers with Sam, or maybe she didn't.

Sam was fussing that he was out of Cheerios because he always eats his way, way faster than Megan and then he is upset that she is still eating.  So this morning he was fussing and Megan was just sitting there and then she reached into her cup holder and threw a Cheerio to him or maybe at him.

Cleaning, Feeding & Standing

Megan has been sick since Sunday night.  She is doing better this morning so I have a few minutes to catch up.

A few days ago while she was playing in the living room I saw her cleaning up her books.  She has gotten so much better about cleaning up her toys but that was the first time I saw her do it without being prompted. Since then she has done it several times.

Yesterday she fed her baby doll without me doing it first.  She has been doing it for some time now but this was only the second time (I think, I haven't been getting a ton of sleep either) that she has done it without someone doing it first.  She just grabbed the bottle and fed her and then gave her some food on a spoon.  Her pretend play is really expanding and that is a great sign of maturing from her.

Since she has been sick I have been putting her in bed each morning so she can get some extra rest.  I am putting her down when she is at the point of only wanting to lay in the floor.  Amazingly once she hits her bed she gets this crazy burst of energy and has been spending almost her entire rest time standing up in her bed.  She is going from end to end, sometimes standing in the same spot for 5 minutes.

New "word"

Last night Will and I were playing with Megan (making her stand to play) at the coffee table for several minutes.  This was after having her walk 12-14 steps across the room multiple times so she was getting tired.  It wasn't quite her bedtime yet but she went into crazy tired mode so I asked her if she was tired and wanted to go night-night.  And she looked at me and said "ni-ni" - it sounded perfect just missing the 't' on the end.  I looked at Will to make sure I hadn't imagined what just happened and he said "I heard it too, she copied it perfectly".

In true parent form, I tried again to see if she would say it and she said "ni" the second time.

Megan has had the 'n' sound for a while but this is the first time I have heard a distinct 'i' sound and definitely the first time she has said 'night'.

Back to school

Last night not too long before bedtime I told Megan that tomorrow (today) she was going back to school.  She smiled and started cleaning up the books she had been reading like she was ready to go.

Today when I dropped her off she was excited to be at school but started snuggling me once we got into the hallway leading to her room.  She did great with drop-off and gave me big kisses.  They said she had a wonderful day and that there weren't any issues with her having been out for so long.

Tomorrow will be her first Friday at school.  It won't mean anything to her since it will just be the second day of school for her and then she will be off again; but I will know it is a new day for her.  It has been easier on me sending her back today than I thought it would be.  I snuggled her extra long last night and then again this morning before school and before nap too.

Officially in size 3T

Megan wore a new outfit today that was a size 3T.  The pants fit her pretty well, except of course the waist was huge and the shirt was a little baggy but not bad.  She is sleeping in her big girl jammies tonight and boy does she look cute.