Pictures

I know I haven't posted any pictures or video lately. The reason is my batteries died and I keep forgetting to pick up more! They don't last very long - even the lithium ones only go a few weeks with videos!!

I promise to get some soon though. In the meantime, Emma is not walking alone yet, but she is getting up and down faster, climbing off the sofa by herself and getting braver every day.

New signs

When Scott had Emma to himself on Saturday he decided we'd all had enough of the two Baby Signing Time DVDs!! Emma had picked up most of the signs and we all new the songs and order of signs!! So he ordered the next two in the series.

The new DVDs arrived today and I watched one with Emma. They have more signs and seem more advanced, but are so perfect for Emma. Why? Because they have signs for happy, sad, yes, no etc. Things that she has trouble showing us with her face, but also because of her torticolis - she never shakes her head, so 'no' would be tough!!

On the first viewing she picked up the sign for 'me'!!

Encouraging Emma to sign might seem counter-intuitive as we really want her to speak, however we are unable to make her speak!! It may be difficult to grasp, but we really can't know how much the Moebius will affect her ability to speak clearly. We already know she struggles to swallow because she has no movement in her cheeks, which is a big part of it!

Providing her with the means to communicate with us how she feels, thinks and her environment not only prevents frustration, but is a great way to develop her intellect. She is already surpassing the 'average' for her age!!

Big thanks goes to Uncle Joe, who sent us the first DVDs. We didn't know how precious they'd become!!

This weekend Scott and I were sick, as in stay in your pajamas and sleep all day without eating! Thankfully Scott's family were able to come over a lot and play with Emma - although she keeps herself amused pretty well it usually involves climbing stairs or playing with the DVD player!

On Monday Scott had to take a day off work because he was still suffering. By 3pm he was asking if he should go and do some work! I told him he needs to rest but he claims to have cabin fever!! Hah!! He should try a week in my shoes. You see I've been really getting cabin fever, but with it being so cold, Emma sick and having so many appointments going out is too much work!! Besides I'd have to change out of my pajamas (or pyjamas for my mum)!!

Roll on Spring!!!

Why?

In youth group on Friday night we posed the question to our youth "if God loves every person on earth, why does he allow poverty, injustice and suffering?" I'll admit I didn't really have an answer, so I was really blown away by one kids answer - "He wants us to help each other."

And there it was, out of the mouths of babes, so to speak!

The more I think about it the more significant that answer was. You see our children, yours, mine, the ones in our schools, malls and hanging on street corners are searching for vision and guidance.

Jesus came in person to provide the ultimate source of guidance. He showed us, in just a few short years the kind of people God intended for us to be. Even the most un-churched among you know the parable of the good samaritan.

Our children are more likely to look to us, the adults around them for guidance on who they want to become, and what are we telling them?

I'm starting to understand that I need to step outside of my comfort zone to show Emma what Jesus meant when he said

Mark 12:31
The second is this: 'Love your neighbor as yourself.' There is no commandment greater than these."

Luke 6:32
"If you love those who love you, what credit is that to you? Even 'sinners' love those who love them.

Luke 6:35
But love your enemies, do good to them, and lend to them without expecting to get anything back. Then your reward will be great, and you will be sons of the Most High, because he is kind to the ungrateful and wicked.

1 John 3:16
This is how we know what love is: Jesus Christ laid down his life for us. And we ought to lay down our lives for our brothers.

Good news, Emma has not had any diarrhea overnight!

At her doctors appointment yesterday they confirmed she has CDiff, so we started her on Flagyl, an antibiotic to target it. I guess it works right away!!

(Of course, now Scott is sick, but thankfully I don't have to clean that up!!)

I decided to delay the MMR for now and she just got Hep A and the Synagis vaccine. I don't want to overload her immune system.

Sleep strategy

Emma has gotten wily in her old age and if she does not want to take a nap she refuses by constantly pulling the CPAP off and standing up in her crib!

This afternoon a nap was not an option. I was not feeling good and needed a nap, but Emma had other plans. At first it seemed like she was getting her own way because I went in to her room, took her out of the crib. However, I brought her into my room and laid her down with me.

Instead of playing, she had to lay there in my arms until she fell asleep, which took about 45 minutes!! Once she was asleep we both got a good two hour nap.

What was surprising to me was that Emma did not have any desats, because she was not on her CPAP!

Tonight I tried the same things, kind of. I put her to bed without the CPAP, and will put it on when she's in a deep sleep and won't fight it! The art of compromise!!

Comedy Central

Some people have suggested we should do a reality show or something (in jest no doubt!) which would be really boring I'm sure. However, this afternoon was one of those classic comedy moments that could have made for good TV.

I was on the phone with my friend, eating ice-cream and working on the laptop (I can multi-task!!). Emma was pottering around the furniture, as she does, and I saw her start to lose her balance. In slow motion I see her try to correct but lose it and she lands on her butt, which is actually a tragic event for her!! As she starts screaming I put everything down and go over to her - I'm a caring mum!!

I picked Emma up and comforted her as I turned to see my ice-cream bowl fall off the sofa edge, contents first and land on the keyboard of the laptop which was on the floor!!

I quickly put Emma down (don't judge me!) and ran to get paper towels to clean up the laptop. Surprisingly Emma just sat there and didn't attempt to get at the laptop!!

It's okay though, the computer is working just fine, bar a few sticky keys!! Oh, and Emma's fine too!!

Check-up

Today was Emma's bi-monthly check-up at the hospital, for her gastric issues. Her growth is okay, but she is still in the 5% percentile (95% of kids her age are bigger). However her development is a source of amazement and delight for the team who couldn't believe her sign language and cruising.

Since the diarrhea persists, for 24 days and counting, we are increasing the pectin and also adding a probiotic to her diet to try and fight the bug the natural way. If it doesn't work or the cultures come back positive we will add some specific antibiotics to the mix.

There has been definite improvement in Emma's 'problem' but yesterday she clearly wasn't feeling 100% and was very clingy. That has it's upside though as I get lots of long cuddles and feel quite special!

Even so, we made it out to the grocery store and spent a fair bit of time playing. Apparently Emma has a destructive side though, as I discovered when I went in to the kitchen for a minute...

This is one of those busy weeks, with all three therapies and two doctor appointments. On Friday it's her 15 month well visit, and she is due for the MMR vaccination. I am so confused what to do here, because I want to take precautions, but don't want to put her health at risk. I know they don't like to break them up as people don't come back for the other shots, but there's no risk of that with Emma!

On another note, when we put Emma in her chair for a tube feed we always put the Baby Signing Time DVD on for her. Well, she's quite fond of them, in fact yesterday even the FBI warning at the start of the DVD got her excited and she actually squealed when the menu came up!! She loves to follow along and do the signs with the children in the DVD.

By 18 months most children are able to say 8-10 words. Emma now has a vocabulary of over 20 signs!! They may not be verbal words, but they count just the same and show her cognitive ability. So smart!!

more and more...

On Saturday when Emma got up her right eyelid was red and swollen! I took her to the pediatrician who seemed to think it might be a stye. So now she has antibiotic eyedrops!

The diarrhea continues, and now Emma cries in pain when she has a bowel movement, which makes for an interesting night.

Poor baby.

Poor Emma, it's no fun being sick, but it must be hard when you don't know what's going on.

Following her pediatrician visit we are trying to collect stool samples for testing. Her weight gain is okay (she is 19lbs 4oz) but diarrhea is not good for any period of time.

The most likely cause is C. Difficile, a bacteria that takes over when antibiotics clear out all the good bacteria in the gut. It doesn't affect normal people much, but Emma's bowels are not normal!

It can be treated with antibiotics but before that we are going to give her pectin. Its something you add to jelly and jam, but it is also food for good bacteria (found naturally in bananas and applesauce , hence the BRAT diet!)

Thankfully the nurse collected most of the samples overnight, so I just have a couple to get today!

In these tough economic times Scott has decided to save some money on razors by growing his hair!! It's been an adjustment for us all, but as you can see, Emma likes it...

Bowel Blues

(If there is any odd spelling or formatting in this post it's because Emma won'\t stop hitting the keys!)

Every so often the gastroschisis rears it's ugly head! As you know a couple of weeks ago Emma went on antibiotics for an ear infection, and as last time she had diarrhea throughout. Although the antibiotics finished last Thursday, the diarrhea hasn't! I guess it means another trip to the pediatrician!

The main problem with the dodgy bowels is that it can seriously affect her ability to grow, since the bowels and small intestines are where nutrients are absorbed. She gets the most simple nutritious food possible, which is about all we can do to help!

Thankfully we go back to the gut doctor next week to see how she's done these past two months.

No nurse

Last night was our first night without a nurse to monitor Emma on the CPAP. How ironic that she is at her worst for taking it off! We weren't sure what to do as I have had to sit in the room until she falls asleep each time to stop her taking the mask off. In the end she seemed to be sleeping soundly so I decided I'd just have to get up and check on her periodically. Putting her in our room would likely have caused more disruption.

She actually did really well, and I was surprised that the mask did not come off until about 4am, when she was really snuggling with her pillow. Initially I ran in there at every sound, but as time wore on I got a bit slower!

I did not have to vent her during the night, or change her diaper (but I wish I had - it was a nasty surprise in the morning!!) However I am still exhausted, so naps are priority today!

It is good to know that we can manage without a nurse if we have to. I wouldn't want to do it for a long period of time though!

Thursday afternoon, after Emma had been napping for a couple of hours I heard a little noise on the monitor. I went up to check on her, only to find her standing at the bottom of the crib looking over the rail at me!

It was very cute, but not good. You see she had her CPAP head band around her neck, still attached to the machine. Also her G-Tube extension was wraped around her body and attached to the side of the crib!

Since then it has only got worse! Before, we could put her to bed and put on the CPAP, leaving her to fall asleep. Now though, if Emma is not ready to go to bed, regardless of the hour we have to check on her very frequently. Very frequently she pulls the mask off her face, usually bringing the headband down around her neck.

Let's not forget how she'll sit or stand, pulling the g-tube extension tight! (She has to have an extension connected on the CPAP to let all the air out that collects in her belly.)

This made it very hard tonight when she kept pulling the mask off and not sleeping. We put her to bed at 8pm and had to get her up again at 9pm! (Knowing full well what I'd find I took the camera in...)

I put her back down at 10.15pm and stood over her until she got the message, and until the nurse arrived!

We used to let her stay in there until she fell asleep, but she could hurt herself with the tubes and wires around her so we don't have that luxury.

Don't get me wrong, it is a gift from God that she has all this energy and strength, we are keeping a sense of humor about it! I just am not sure how to make sure she gets enough rest!!

Here are some more demonstrations of how our baby is growing up...

Good eye

Call me crazy [again!] but we went to the hospital to see the opthamologist. We were over a half hour late, but went right in. The doctor was very happy with her. He said she is hardly crossing her eyes - a big problem with Moebius, and that she is focusing well. We have done well at keeping her eyes lubricated, essential for healthy corneas, but she also helps by consciously 'blinking' every so often.

We go back in 6-8 months.

Snow Day

Today Emma has an appointment at the opthamologist at the hospital, however we got over 6 inches of snow last night! I think we might have to reschedule!!

Unfortunately Scott has to work anyway, because I would love to go out and play in the snow! We never had much when I was a kid, so it brings out the child in me when it does snow. Of course we're lucky that they plow our street and we have a shovel - not like the people in the UK!!

Here's a funny story from last night. We decided (perhaps unwisely) to eat our dinner of fajitas in the living room, using the ottoman as a table. Of course Emma was incredibly curious, but when we said "No" she did not touch the plates etc. She worked her way around the ottoman and away, so we relaxed.

Then she found Scott's large glass of diet coke and ice and poured it all over the floor! He learned the hard way that you can't put drink on the floor anymore! Anyway, as we hurriedly cleaned up the flood Emma crawled back over to her 'hole' like nothing happened!

Emma's 'hole' is her ball pit...

At first she was scared to go in there, but now she goes in and out, playing in there and generally keeping out of the way! She also takes most of her toys in there, so it is much more than a ball pit now!

Big Baby

When a toddler does not want to go to sleep it can be a challenge to know what to do! Last night Emma was very tired but did not want to be left alone to sleep. I had made some adjustments to the CPAP mask that I realized were not comfortable, to I took the mask out of the room and left her to doze off.

When I returned to her she was sitting up in the crib getting ready to stand. That wouldn't be a problem for most kids, but Emma is attached to the crib through various wires and tubes! For example, standig up would likely have pulled her g-tube out!

I couldn't get her to lay down until I finished my task so I called on Scott to stay with her. I overheard him on the monitor talking about cuddling up, which surprised me because for the same reasons you can't just pick her up and cuddle her.

When I finally returned to the room I could not believe my eyes, well, you can see why!

For today's nap she fell asleep well, but after needing a diaper change she was awake and not wanting to rest. I tried to just leave her in there, but she pulls the mask off and plays with it, often blindfolding herself with the head band! I gave up after replacing it 4/5 times! I hope the same thing does not happen this afternoon!!

On another note, this afternoon I was snacking on broccoli and carrot chips with ranch dip (I can be healthy!!) Emma was sitting with me mimicking my mouth movements and reached for the carrot with dip on it. I gave it to her (making sure there was nothing solid on it) and she licked it clean! We did it a few times, she was really enjoying it until she started choking. I don't know if some carrot came off or she swallowed wrong but she was really choking.

I grabbed her and ran upstairs to the suction machine with her. I didn't see anything solid come out, but she stopped choking. It was quite a scare! Next time I'll make sure the suction is nearby before she puts food in her mouth!

Time Out

Today I began to implement Time Out for Emma. For those of you not familiar with it, TO is a punishment (I prefer consequence) of disobeying instructions or being naughty! You have the child sit/stand in one place, quietly for a period of time, after which they need to apologize and then can go free! I believe the time is based on 1 minute for every year of age.

You might ask why, or wonder why we waited so long, I'm not sure if we're early or late!! There are very few things Emma is not allowed to do, though I'm sure we'll find more as she gets nosier! The main one is to play with her feeding tube and bag. If she is sitting in her chair and starts swinging the bag we usually shout "Emma, no!" at which she drops the tube and grabs her shirt as if to say "I wasn't doing anything!"

The second big thing is climbing up the bottom stair. We have a gate there now, but when I am in the room I often leave it open. Either way, Emma will cruise the side of the sofa to get to the stairs (you'll see from the video below!) and then get stuck with nothing to hold on to!

The first time she went over there this afternoon I said 'no' a few times and her response was to look back at me, say "eh" and then keep moving! I picked her up, sat her on the sofa and waited for a minute. She doesn't like to sit still so I was surprised at how well she took it!

After that I had the gate closed, but it's not been working properly. While I was pumping she went over there again, but this time pushed the gate open with one hand! I wasn't too worried as she'd never had chance to master climbing up a step, in fact she's never climbed over more than a leg!

Clearly I was underestimating her, because she swung her leg up and climbed on to the step. Immediately she moved on to the next step!
I went over and grabbed her, putting her in time out again. (I skipped the apology bit for now!)

Sure enough it wasn't long before she headed back, ignoring my most authoritative tone! As I went over to get her I thought I'd video her climb, after all it's still a milestone, if a naughty one! It seems the camera was a deterrent and she came away from the stairs! She's such a poser!!

I'm hoping that if she can understand what Time Out is and recognise the T sign I make with my hands like they do in football, I won't even have to say it!!

Last night Scott was playing on the Wii and I was on the laptop. Emma was crusing all around the furniture as usual and once or twice came to my feet and reached up for me to pick her up. I put the laptop down and picked her up, only for her to get down again because she wanted the laptop!

Therefore, when she came around again I took no notice of her. Scott pointed out that she was signing please, so I put the laptop down pointing out that she would only get down again! however this time she nestled in the crook of my arm and sat with me for about 10 minutes!

That might not seem like a big deal but Emma NEVER does this! The only time she will sit quietly with me is when she is tired or upset (usually after falling down and bumping her head!). The fact that she came over to me and asked to come up was such a defining moment for me.

There are few things in the first year that really make you feel like a mum. Most of the tasks you do can be done by anyone, Scott is the only one that really makes her laugh. We have yet to hear the words that make it true ("mummy" and "daddy"), so every time she does something like that it makes me feel so special!

Of course much of the time, when we're using the laptop Emma will cruise over and stand behind it. Then you see this little hand appear from behind the screen as she reaches round to push the keys! It's very cute, except when you're trying to do something important, because she will not go away while the laptop is open!