It's snow fun!

A couple of weeks ago we woke up on Saturday morning to a couple of inches of snow.  It looked like the answer to Emma's prayer a week or so earlier, when, in the car on the way somewhere she said out of nowhere "Jesus, please make it snow."  "He will" I told her, we just don't know when!"

Unfortunately, the rain that followed the snow that morning, in freezing temperatures, left a nice thick crust of ice on the top.  It even froze the minivan door shut!

By the time we got outside after nap, the kids weren't even heavy enough to leave footprints on the icy snow!

We made the best of it though...

We even made a snow dog from large ice boulders the plows left behind!

The kids picked up chunks of ice to throw like snowballs, only harder!!

Then inside to warm up,

 and relax...

Forts

Saturday night seemed like a fort night...

 

 

Bedtime Story

As you can imagine, Friday night was quite the drama.  Toby went to bed pretty easily, in the toddler bed we put in his room.  (We left the crib in there for the night, to be sure it was no longer needed.)

At first he did not want to go to bed because Emma was still up and Grant arrived.  After a brief visit from Grant I tried to get him to stay in bed, but after a while he would sneak out on to the landing.

Eventually he fell asleep.

Scott had previously agreed that he would be the one to respond to Toby on Friday and Saturday night, and I'm so glad he did!  Friday night Toby woke up in the early hours and came out of his room.  I'm not sure how many times he got up or how long he cried (close to 2 hours I think), but eventually he went back to sleep.

I forget exactly when he got up on Saturday morning, but it was reasonable.  As Scott and I brushed our teeth in the bathroom we watched Toby, who wanted to go downstairs, with one hand, pull the [pressure closed] stair gate open without releasing the handle!  He was not being naughty, as we'd never said not to open it - just like we never said to not climb out of his crib!

The crib and bed share the same footprint, but not having the height really made the room feel bigger.  Toby even played up there for a while

Normally he only plays upstairs in Emma's, bigger, room.

Toby napped in his bed on Saturday afternoon without much ado.

On Saturday night things were much the same as the night before, and we still shut the gate because Toby's door is facing the stairwell and at least he wouldn't walk out half asleep and fall down the stairs!

Apparently the resistance was lesser that night and again Toby finished the night in his new bed.

On Sunday, he napped in there again, but sensing a pattern I was dreading my night shift on Sunday!  I am a much lighter sleeper than Scott and was up with every little sound (including Emma wanting to get up at 4am!).  However, Toby did not surface from his room until 5.30am, when Scott had gotten up for work!  Of course I let him come and cuddle with me until I had to get up.

Emma's been doing much better since I told her to look at her digital clock and only get up when it says "6" or "15" depending on bedtime/naptime!

Tights

This is Emmas favorite dress. Don't ask me why, it was one of those
spontaneous "it costs less than a sandwich, I'll grab it" from Walmart
purchases.

As always she wanted to wear it today. But for some reason she is now
willing to wear tights, the condition under which she can wear a dress
in winter! (probably because of ballet!)

Thing is she doesn't have many pairs because she would never wear
them! So this was the odd pairing today, but she couldn't have been
more happy!

Unfortunately the cheap plastic "pearls" wouldn't stay on so she had
to leave them home!

The Demonstration

What now?

Last night we tried to leave Toby in his crib all night.  He was not happy.

At first I went in to try and calm him back to sleep, which seemed to work until I left.  Then, after 45 minutes of yelling and crying (him, not me!) I sent Scott in to reassure him we were will still there.

That made him even more mad and after just a couple of minutes I heard the crib side moving and then the thud of two little feet hitting the floor.  Then I heard his door open and he started down the stairs.

In disbelief I ran out of our room and got him as he searched for us.

I said to Scott "what do we do now?" At 1am.

In lieu of a better idea we let him come in with us.

This morning he was trying my patience, hitting me and Emma.  I resorted to a crib time-out...need I say more!!

Scott suggested moving the shelves by his bed in case he was using them as a ladder.  I even took out his big puppy so he had no step up.

I was dreading nap time, but he slept for over 2 hours before calling me to get him up.  When I didn't move fast enough because he climbed out himself!

I guess he didn't need any help from furniture.  

We'll have to figure out the next step tonight!!!

Toby Talk

Scott's parents are doing such an awesome job helping Toby with his speech. The main part - getting him to slow down and say each word seperately!  Check out his color pronunciation...

This morning he was singing...

Tube tales

Last night we took the kids to the indoor playground, and met some other friends there.  When we got out of the car and saw our friends Emma said to me "Tell them I don't have a tube."  I told her to do it but she refused.  When they gave the appropriate congratulations she was happy!

It had been quite a while since we last went and I noticed Emma was a lot less confident and independent in the playground.  I tried not to stay with her the whole time, but I'm not sure if she just wants time with me, or is lacking self confidence!

We got home a little before 9 but I still wanted to give them a bath.  Toby got in first while I helped Emma.  I wanted to take her dressings off to check it and wash the site in the bath.  She flipped out, and I wavered before just taking off the tape.  

There was even less discharge than the day before, hardly anything and the hole has definitely closed significantly. When I told Emma I was done taking the tape off she was really excited and did a little dance, singing that she had no tube.

She happily showed Scott and we had a happy bath time for all.  

After bath I put a large Band Aid over the hole, just in case, and put her night gown on.  Toby wanted a Band Aid too, so he also had one on his belly!

Emma went to bed and seemed happier than she has been lately.  

This morning, as I helped the kids eat their breakfast, Emma said "I'm glad I don't have a tube any more, because I guess sometimes you just have to take a chance!"  (That was word for word!)

As we read some books together she was rubbing her belly and I asked if it was itching.  I took the Band Aid off to see and it was clean.  However, it seems the DuoDerm the nurse put on had really irritated her skin, and she has a red bumpy rash around (but not on) the site.  I just put some anti-itch cream on it and hopefully it will clear up soon.

I called the doctors and they said we can leave it exposed, but might want to put a Band Aid on it for a few days. They said it may also leak more before it closes fully, but I''m believing that it is healed.

One thing's for sure, Emma is handling the change much better.

Adjustment Period

While I was not emotionally prepared for Emma to lose her tube, in actuality the process was quick and relatively easy.  However, there was more to it than I thought.

Yesterday afternoon Emma seemed very emotional, going back and forth on her feelings.  Surprisingly, when she did see Scott she proudly told him what had happened.  but later, and maybe due to fatigue (she is my daughter after all), everything seemed to upset her.  Scott called in the big gun - the person who kids love to see, more than Santa: Kimberly!

Sure enough, as soon as we told Emma who was coming she perked up immediately and was playing with Kim for a long time without issue.  At one point, as they played dolls, Emma's doll told Kim's that she her tube was gone.  When asked how she felt about that (the doll, not Emma) the doll said "Okay.  Come on let's go..."

After I had put Toby to bed (an ordeal to say the least when Kim was still there and Emma still playing!), I told Emma it was bedtime.  She got quite upset so I asked her if she wanted Kim to put her to bed.  She did, but expressly said that she didn't want her to see her belly. 

So I put her nightgown on and brushed her teeth, before Kim read her a story.

I can't fully understand her sense of loss.  This morning as we got our shoes on, she said "I just wanted to keep my tube."  I asked why and she didn't have a real answer, but I did see her keep putting her hand to her belly.  I think maybe she played with it a bit, or it was something that made her special.

I do know it will take a long time to get used to it not being there.  Forever I have protected her belly when she slid off the bed or a climbing frame.  (I even subconsciously do it for other kids!)  We frequently caught her shirt on the tube when we took it off, causing her great discomfort. 

But on the other side, it was a security blanket for me.  If I should ever need to, I could always give her meds or fluids through the tube - not that I have in a really long time.  The epitome of "just in case" I guess!

Scott and I waited until Emma was asleep to try and change the dressing on her belly.  The doctors have this stuff called DuoDerm, which sticks to the skin and then you attach the dressing to it.  The DuoDerm stays in place as a barrier so you don't have to keep ripping tape off the skin. 

I got about half the tape off before Emma really woke up and got upset.  Quickly I finished and then we brought her into our room. 

There was very little on the gauze that I removed, suggesting the hole is closing up (or she didn't drink enough for it to leak!).  We'll see how it looks tonight after a whole day.

Please keep praying for Emma.  It would be terrible if this great step forward was a black cloud for her until she is much older and maybe can understand better.

Cause for celebration

The day started out surprisingly well.  (Usually when I have a doctors visit with the kids I get stressed and frantic.)  Not today.  I got up around 7, when Emma came into my room.  The kids watched tv in my bed while I got ready to face the day.

I dressed the kids and gave them a bite to eat before we hit the road.  We were on schedule and despite a high number of detoured roads (what's that about?) we arrived at the hospital with time to spare.

On the way into the city Toby was exclaming about the tall buildings (we're talking 8 floors, not the 50+ floors in the center!).  Emma looked out at one and said "Look at that one, it's humungous!" and of the VA hospital she said "look at that one, it's the most beautifullest!"  She really sees alot through rose-colored glasses!

We were scheduled for a routine check-up with the GI doctor and nutritionist, nothing more, nothing less.  I had emailed the nutritionist prior to our appointment with my concerns about the battle we have with Emma over drinking her water.  We don't want her to have issues because she is forced to drink when she does not want to!

We waited for several minutes in the main waiting room, which was actually fine.  Emma and Toby played around, watched TV and I actually played with them.  (Usually I get impatient or frustrated with the kids.)

Emma got weighed in (32 lbs) while Toby and I scoured the waiting room for the tiny Ariel figure Emma had brought with her - and subsequently hidden behind the vertical blinds!

Once in the exam room Emma and Toby sat on the bed while the nurse came in to talk to me and examine Emma.  While she was talking to Emma, the doctor (a particularly jokey and informal guy) popped is head in and (after taking a picture of Emma on his iPhone to send to her original surgeon - as usual) he said "So, are we yanking that thing?"  (Translation: Are we removing her g-tube today?)

I immediately panicked and said "I am not emotionally prepared for that today!"  He laughed.

We had so many unanswered questions - we still vent her occasionally, she doesn't drink spontaneously often enough etc.

The nurse told him she hadn't had time to evaluate yet and he left.  I talked to the nurse and as we discussed our concerns it became clear that they were not something the medical team worried about and they felt it was fine to take the tube out.

Then the nutritionist came in and told me that we can allow Emma a little more freedom in how much she drinks.  We need to ensure that she does not become dehydrated, but fighting with her is not necessary.   But keeping some sort of routine will help it become habit for her to drink throughout her day.  

That was reassuring, knowing we shouldn't need to tube feed her water at some point!  Whether I was emotionally prepared or not, did not change the fact that Emma is ready to move on.  She did not see it like that though.

Stupidly, I had promised her that the doctors would not hurt her today.  And as I told her they were going to take the tube out, she got really upset and grabbed her tube saying she wanted to keep it.

Bye-bye tube!!

It took the nurse a while to get it out because Emma was crying and tensing her stomach muscles.  Once out, the hole was pretty small and the nurse taped a wad of gauze over the hole.

The hole could close-up by itself over the next few weeks, and we just need to keep the gauze in place to absorb any leaks and change it so any acid does not damage the skin on her belly.  (Only fluid will leak, not food!)

If the hole does not heal properly, they may need to close it surgically (boo!), and if it leaks profusely, we may have to re-insert a smaller tube to plug it until then.  Please join us in praying that the hole will heal up miraculously fast.

After all, the tube (placed February 8, 2008) has been removed in under 4 years and I am sure none of us expected that.

Emma was inconsolable after the procedure - until I offered to take her to Target for a new toy!  She calmed down, but did say that she didn't want to "tell Daddy because he won't like it" and that she's "sad my tube is gone".  On the flipside, she has also said she is happy she had her tube out and seems to be looking for reassurance from me.  

It must be like losing a body part, that g-tube has been so much in focus and use over the years.

Neverthless, this is one giant step forward to Emma becoming "de-medicalized"!  And di you notice that I was calm and peaceful through the whole thing?

And the peace of God, which transcends all understanding, will guard your hearts and your minds in Christ Jesus.  Phillipians 4:7

Prima Ballerina

Here are some of the pictures I took of Emma during Saturdays ballet class...

On Sunday Emma went to a birthday party for one of the girls in her pre-school class.  It was at one of those places with an indoor climbing area.  Unfortunately the area was small and the obstacles were too big for her. It was made worse by the fact that she only knew a couple of the kids and they were much quicker running around.

 

She handled the pizza like a pro though!!

I think it was a little discouraging for her - at least it was for me!   It's good to know that ballet is really going to help her strength, balance, posture and confidence.  The teachers are really supportive and many of the girls are knew and un-coordinated!

We're going to take the kids to our favorite inside playground this week, where Emma has plenty of space and can manouvre around by herself.  I have to try not to project what I see and assume that Emma is self-conscious about her abilities, but that said I will do everything I can to help her find self-confidence and inner strength.

And she has two special boys looking out for her...

Airport Adventure

A few months agao, for a night out with the kids, we took a drive down to the airport and parked under the flight path so the kids could see the planes close up.

We took some snacks, folded down the third row of seats and let the kids loose in the car.  We all ended up in the front seats watching the planes descending toward us.

It was fun...

Post-ballet feast!!

Strange Saturday

Saturday did not go according to [my] plan at all!

I initially planned to get up early, like 7am, and take the minivan in to have scheduled maintenance.  However, I never called ahead and with two coughing kids sleeping in bed with me the night before, I was reluctant to get up! 

In the end I got up at 8am and asked Emma if she'd like to go to dance class.  My friend and I had discussed taking our daughters and she was going to check out the class at 9am.  Emma popped right up and was totally in to it.

I took her to get dressed and she agreed to wear black leggings, a black t-shirt and the black ballerina skirt she was given some time ago.  This was pretty cool, because normally she refuses to wear skirts with leggings, but she believed me that it's what ballerina's wear.

She happily wore her "costume" (as she called it) and we went off to dance class.  Out of the car and heading for the studio, Emma tripped and hit the ground hard.  She cried and when I got her inside I saw she had ripped the knee of her leggings!  She was easily calmed down ("Do we need to go home?") and the teachers said they had tights she could wear.  (A brand new pack costing $8, but it's all worth it!)

We were kind of late so I didn't have much time to talk to the instructors or find out what the routine is.  I suppose that worked out because I tend to over-think and over-inform people!  As it was I did mention to the main instructor that Emma has Moebius and the subsequent balance and strength issues.  She was fine and as you'll see below, Emma really didn't seem any less coordinated than some of the others!

Sorry about all the mini-clips - I can't find a way to download them off my phone in one piece, and I didn't have my "always in my purse" camera, ironically! 

Mary Ann, Ilah's mom and myself waited in the lobby, watching our graceful swans in the classroom.  Ilah, who turned 3 that day, did great too.  Emma seemed to be making friends, but may have over-stepped the line when she told another girl to get back on her spot!  The girl wasted no time in telling the teacher when she saw Emma stray also!

Emma was instantly captivated by the wall of mirror's in the room and kept dancing around to ensure the best possible angle of herself!!  It was quite possibly the cutest, funniest hour.

Afterward, before I knew what was happening, she had a new pair of ballet slippers, tap shoes and was in the line-up for the recital in May!  Now, I know I like to shop, but in Jekyll and Hyde fashion, I am also a spend thrift!!  However, there was no hesitation on my part to agree to whatever costs were associated with this new love for Emma.  It's just another reason why I'm thankful to be working and can afford it.

When Toby is ready to start pre-school and hobbies we will endeavor to provide the same opportunities for him, without hesitation.  That is if he doesn't run up too many medical bills in the meantime...

Later that afternoon we headed over to Ilah's birthday party.  As you will have seen, it was unseasonably warm (for March, let alone January!) and spontaneously the party flowed out into the backyard. 

About 2 hours into the party, everyone was outside for "pin the strawberry on shortcake".  Toby, totally disinterested ran around throwing the dogs toy for her and climbing on the play equipment.  Heading down the shortest slide ever (not kidding, it's like two feet long) he fell off the side and bumped his head on the corner of the stone BBQ that was nearby.

He got up and started crying as Scott saw blood start to flow from the side of his head.  He grabbed him, yelled "he's bleeding" and headed for inside.  I followed and called for Ilah's mom, who happens to be a nurse.

It was a deep cut, bleeding nicely so we headed off to the ER.  By the time we got there (me driving, Scott keeping pressure on the wound and getting nauseous from me driving) the bleeding was minimal and we could see an inch long cut. 

(I was gonna post a picture here, but thought you might not like it!!)

Toby, who had not napped that day and at risk for falling asleep from concussion/fatigue, showed no signs of either and was bouncing of the walls (figuratively of course) as we waited for two hours in the small, crowded waiting room.  Once in the treatment room he laid on the bed with me, eating crackers.  He fell asleep on Scott after fighting it hard, after 3 hours at the hospital - definitely not concussed!

 You know how much it bothered me that he was rolling around on a hospital floor. (They aren't the cleanest places, really!!)

The doctor hoped to do the stitches while he slept, but Toby woke up and while he shouldn't have felt pain, was not happy.  I was laying holding him and his arms, as Scott held his legs which were doing their best to push off me, and the nurse held his head still! 

He has three stitches which really don't seem to bother him.  If his head does hurt he pulls a sad face, points at his head and says "Me booboo!"

After 3 and a half hours at the hospital, we were back at the party (everyone had left and eaten all the cake!), Emma didn't notice we were gone and Toby was raring to go again!!

We have some tough kids!!

That's right - its January 7 and I'm wearing flip flops outside!!!

Emma finds a new use for the tea cosy I got Scott for Christmas.
That's right, he loves tea way more than I do!!

Studies show...

while it's true that you can pretty much find a "study" that backs up any perspective, it was a source of joy to me today to see this as I perused the internet on my lunch break:

Working Mothers Are Healthier (STUDY)

The article, which did not criticize any mom status, echoes my feeling about working, which is nice, on my first day back after a long break.

The article (found here) said "the working mothers experienced better work-life balance and fewer incidents of depression when their kids were infants and pre-schoolers."

And added "It also may be that mothers who are home with children all day experience greater child-related stress which is relieved to some extent once children are in school,"

I was off work from December 23 until today and it really was a question on whether I would find myself wishing to have the freedom to stay home each day.  

It was nice to wake-up with the kids (literally, one on each side!) and kick around in our PJs for much of the day. But, when it came to running errands or doing chores, I found myself getting stressed and frustrated with the kids.

It wasn't fun for anybody.  They wanted to play with me because I was there, and I was trying to somehow do it all and let them know I love them.  I'm not good at finding that balance, no, I'm terrible at it!  I can not switch of my chore radar long enough to sit down and color or play cars.  (Maybe I'm programmed to work first and chores seem like the primary responsibility for me as "stay-home", when it should be the kids come first.)

Interestingly I felt more guilt about that than I do when I leave them to come to work.  Maybe that's because they have such a great time with Nanna and Pops!  (All week they asked to go and see them, and if they can't they want to call them!)

When I'm at work during the week, I feel less of a burden to get all the chores done because I know that I have been busy earning.  That may sound crazy, but my logic does not always follow conventional wisdom!

In conclusion, for me and my family, it is better for me to work part-time (at a job and company I enjoy) and easier for me to dedicate my free-time to the kids in balance with that. 

Regardless, the kids seem happy and while I will always struggle to leave them, any time, any where, Emma helps me.  She picked up a line from a movie at some point, about never leaving me, or me never leaving.  She'll hug me and tell me "I'll never go away from you."  I hug her back twice as tight and say the same back to her.  She often now adds "but it's okay if you go to work!"

(In case you're wondering, because you know me really well - I do also add that if, for some reason, I was not around, that I will always be with her in her heart, as long as she remembers me.  To which she replies "in my belly?!"

Exercise bike

Big thanks to PB and Esther for passing along a video game bike that
they were given but never used.

Emma loves it, but keeps asking for help pushing the pedals!!