Our Emma!

All parents know their child is special. We are no exceptions!! We get so excited when Emma does something new or unexpected.

This afternoon Emma was in her recliner having a tube feed. I went to check on her and she was holding her eyes closed. As I vented her she closed her eyes without her hands a few times and seemed to be waiting for a response from me. I asked her to close her eyes again and she did. I clapped for her and asked her to do it again. When she kept doing it I got very excited.

You see, Emma can not blink and only occasionally does she close her eyes other than sleep. We were hoping that one day she would learn to control her eye closure like this so that she could comfortably put her face in water, maybe squint in the sun, things like that.

We didn't expect it to come at such a young age, and without any coaching from us.

The game ended abrubtly when Dora came on the TV!!!

After lunch, and Dora I took Emma upstairs for her nap. She was really tired, having been up for 6 hours, but when I put her in bed she perked right up! I gave her the usual nap time instructions ("Go to sleep") and left the room. I started to do some things in my room so I could be on hand if she didn't go right to sleep.

After a few minutes I heard some unusual sounds on the monitor and went to investigate. I found Emma sitting on her bed flicking through her Bible - something she likes to do every time she wakes up! As much as her interest in the Bible is an answer to prayer, I took it away and sternly told her to go to sleep. It's hard to keep a straight face when she's so playful and naughty!!

I had to call Scott and relay the story. We're so cheesy - constantly telling stories of things that she does when either of us is not there.

Earlier Scott had told me that at church yesterday she was clapping and raising her hands during the songs, as many people do. Emma was not content with that though, making Kimberly and Pops clap along with her!! I can't imagine where she gets this bossiness from!!

God is good

We gave Emma the middle name Hope because she really helped us to understand how important hope is. Despite all of life's trials, we can find joy in all circumstances when we put our hope for the future in the God of all creation (not in our own strength or understanding!)

When we picked Toby as the name for the new baby (because we like it!) we were thrilled to discover that it means "God is good". That's a tough concept for some people to grasp as they assume that God is either behind bad things that happen to them or that he should protect us from those things.

However, if we look at John 17, Jesus, when he prayed for us said "My prayer is not that you take them out of the world but that you protect them from the evil one."

To remove all trials from our lives because we believe in God would not benefit us - we would never grow as we can only do in the midst of trials. However, it is through our faith and trust in God that we receive protection from the worst that the devil can throw at us!

However bad it gets, there is always a way it could be worse! That's why we must always be thankful to God, knowing he has protected us from what the enemy would really like to do to us!

Here's a devotional that explains more.


God Is Watching over You
by Rick Warren

“Surely your goodness and unfailing love will pursue me all the days of my life, and I will live in the house of the LORD forever” (Psalm 23:6 NLT).

God is watching over you.

When King David writes, “Surely your goodness and unfailing love will pursue me,” he’s not saying, “Surely only good things will happen to me!”

The fact is bad things happen to good people. What David is teaching us is that God can take bad, evil, and difficult situations and bring something good out of them.

It’s one of God’s great promises to us: we can know that all things are working for our good “if we love God and are fitting into his plans” (Romans 8:28 LB). If you’re a believer, the Bible says all things are working together for good—not that all things are good, but that they work together for good. There’s no difficulty, dilemma, defeat, or disaster in life that God can’t ultimately turn toward good.

When you understand God’s grace and mercy, there’s no need to fear the future. God isn’t trying to get even with you. Jesus shouldered the penalty for everything you’ve ever done wrong or will do wrong. He paid for it on the cross. So when a bad thing happens, you don’t have to think, “God’s getting even with me.” That’s how God’s grace and mercy work.

Mercy, like goodness, follows us in life. Picture a parent following a little child around picking up after them; God is constantly picking up our messes.

Think about this:

• Christians go to the future, not with a question mark, but with an exclamation point. God will be with you no matter what happens. He will help you out.

• God’s goodness provides and protects; God’s mercy pardons and forgives. God’s goodness will supply; God’s mercy will sooth. God’s goodness will help; God’s mercy will heal.

• Goodness is the fact that God gives us good things in life that we don’t deserve. Mercy means God holds back the condemnation we deserve.

Tide turns

Today Scott and I had a meeting at church and were out for about 6 hours. She had a great time with Grandma and Pops, but was excited when we got home. Surprisingly though she breezed past Scott and into my arms first!! Yes, I was thrilled!!

I put her down for a nap shortly after, about 2 hours later than normal but she was willing. I watched her from the hallway for a couple of minutes to make sure she was going to sleep. I saw her kneel up, take a pacifier off the nightstand and then put the one she already had in it's place!! Then she lay down and slept. And slept - for 3 hours!!

When I went in to get her she was sat up in bed waiting for me! So far she has never climbed out of bed by herself. She waits for us to come in and unstrap her foot from the pulse-ox.

We headed out for a few errands and picked up our friend Jeremy on the way. His wife and kids are away so he came over to watch the Phillies. We got some food in and Emma tried the lime tortilla chips and salsa con queso (spicy cheese dip) and could not get enough!! In fact she refuses to eat the aby food I try to give her, preferring to wait for some table food. Not sure how we're going to progress from here!!

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Here are a couple pics from Friday night when daddy got Emma dressed for bed... (she got changed because it was way to hot for pjs in August!!)


This is Emma and Abby at the pool on Thursday...

This morning we took advantage of the great weather and headed to our friends pool - Emma, myself and Kimberly. It was only 10am but so hot, I didn't take much coaxing to get in the water - nor did Emma!!

Previously every time we've been to the pool this year Emma would not let us put her in any flotation devices, but thankfully today she did - well, I put her in and ignored the initial protests!! Check out the pictures, today and last year:

2009

2008

She floated around the pool for an hour!!

We headed home and took a long nap (yay!!).

Here's a picture from the other day:
She got this pony for her 1st birthday but was scared of it!! I guess now she's bigger and is slowly getting more comfortable around animals (stuffed and real) she feels better! She loves to press the button to make it 'neigh'!!

I've updated Emma's list of words too. she now says "Cheese" if you point a camera at her!! She also can say "Wawa", which is a local convenience store, and "Banana" (or "nana")!!

Big girl

I mentioned on the weekend that Emma will point to herself if you ask "who's a big girl?" I found out today she will also do that if you ask "who's cute?"!! I did not teach her that, so it's really funny, and cute!!

This evening I had to put her in time-out (TO) for climbing the stairs and not getting down before I counted to 3. I called her down and told her to go and sit in TO, which is a round orange mat in the corner of the dining room. She went right there and sat. When I went to get her out of TO she stood up, signed sorry and gave me a kiss!

Then she signed potty and grabbed her diaper!! I can take a hint and changed her right away. I have an inkling that she would do well with potty training, but I am not trying to start anything else right now! However, when we were out the other day she found a Dora potty which I got for her! It's so cute, it has a back, for sitting comfortably and the top lifts of to go on a regular toilet as a child seat! For now it's hidden in my closet until such a time, probably after her birthday.

Good report

We had our 36th week visit to the midwife today - they are weekly here on out. I'm pleased to report that my weight gain is good (only 3 pounds in the past 3 weeks!!), blood pressure normal etc!

The baby continues to move pretty much all the time. Watching my belly has become somewhat entertaining as the baby recreates scenes from Alien!! In fact Emma's therapist, Melissa, gets completely freaked out by it - which is funny in itself! I don't even need to sit and time how many times he moves in an hour, I can feel it no matter what I'm doing!

My bump is measuring well, which hopefully means he's growing normally and is not some huge gigantor baby!! It's better that I don't know for sure as I might lose my resolve to go without pain meds, or at least try!!

Scott and Emma were with me today which is always fun. Scott and I had some questions about the labor and hospital which we got to ask. Since last time I was induced it was all planned and carefully monitored so even the labor will be a new experience this time!

I am allowed to eat during labor - sweet!! I had to survive on ice-chips and crackers for 24 hours with Emma!

The midwife will be there the whole time I'm in labor, on the ward if not the room. My doctor went home for the night while I was in labor with Emma! There were other docs but it's not the same!

There is a jacuzzi tub in the hospital that I can use while I'm in labor. I'm told it's very good to relax you.

I will be required to stay the whole 2 days after delivery. I'm not sure how I feel about that, but Emma will be well taken care of so it could be a nice rest!

In the meantime, Scott and I have designated Labor Day weekend as our prep time for, well, labor day! That will be two weeks before D-Day (Due day!!) One can only assume baby will not arrive before that!

All the baby clothes have been washed (and most are white - just in case!). I've put together my wash bag and will do the rest on that weekend.

I think we are a bit excited about the new arrival, but I know that I am incredibly nervous with so much of it being a new experience. I don't expect that to change much, all I can do is prepare as I know how and leave the rest in God's hands. It's almost like that feeling when you went back to school after the summer!! Everything was familiar but you weren't entirely sure what to expect and what would be different.

One things for sure, the blog will be the first place to see pictures and get all the details!

It's all good

Emma went to bed last night between 8 and 8.30pm. She was very tired! As soon as we walked into her room she climbed into bed! I felt bad that I had to take her out to put her pajamas on! Then she climbed right into bed and I had to take her out to brush her teeth!!

Until now the last part of our bedtime routine is to put her eye gel in and tape the pulseox probe to her foot, which I do on top the dresser. Then before I lay her in bed we cuddle and pray. But last night she so wanted to get into the bed I put her on the floor and let her climb in herself. Then I knelt beside her (not as easy as you think!!) and we prayed there. It was really cute and was just one more step of independence!

This morning she slept until 8.30am!! 12 hours - that is very rare and I might have been worried after yesterdays fall except Emma was fine last night!

Our friends came over for dinner with their daughter Abby who is a couple months older than Emma. This is the first time Abby has visited here since Emma started walking. It was so funny watching them follow each other around. Although kids this age don't really play together Abby and Emma found a mutually agreeable activity...

The two dads took the girls outside to play for a while so we mums (both in our third trimester of pregnancy) could chill, which meant ice-cream sandwiches!!

Before they left I put Emma in her chair for a feed. Before we put the milk in we have to let the air out of her belly. Abby has seen this once or twice, and she is a quick learner...

Do as I say,

not as I do!!

It seems I forgot my own advice today - shocker!!

Emma was in the nursery at church today, along with 13 other 0-3 yr olds! Scott took her down and gave the best instructions he could (short of teaching CPR!) and also showed one of the volunteers how to use the g-tube.

I went to check on her after about 20 minutes, but I didn't go in, just looked to see how she was doing. She was playing with the other kids quite happily, of course!

At the end of service, at least an hour later, when all the parents went to get their kids i headed down to collect her. While the other kids were running to their parents, Emma hung out, chewing on the toy she had (I know!) until she was ready to come see me!!

Apparently she was the best-behaved, though they may say that to all the parents I don't doubt it!! I think it really means she was the quietest and least trouble, which is her! Also we were given the picture she had been coloring on. They were impressed with her advanced grasp of the crayon (so proud!) but also you could see where she was trying to color in the lines!! I was told it was all her, so I'm very proud!!

I took her back up to the main floor to see Daddy. (Did I mention she got up before 6.30am, and it was now 5 hours later (nap time) and she'd been playing all morning? You'll see why that's important!)

Emma headed to the front of the sanctuary where there are several steps and levels. She always tries to climb up and I always try to stop her, although she inevitably finds someone who will let her up! For some reason this time I was fine to let her stand on the lowest step while I sat nearby.

It was quite traumatic as I watched her fall face first onto the concrete floor in front of her. I moved as fast as I could to scoop her up as she started to scream. I'm not even sure I moved right away - I was in shock! I held her close and prayed that she was okay - in my mind it couldn;t have been worse if I'd watched her fall off a cliff!

I walked over to my purse with her and found her pacifier. As she caught her breath through the crying she calmed down pretty quickly and lay her head on my shoulder. I tried to blame it on Scott, for always letting her do crazy stuff, but I was the one watching her and felt really guilty.

Wasn't it just last week that I said we needed to be extra careful when she is tired so she doesn't hurt herself?! Yes, it was! Nice one deb!!

Lesson learned? By me, yes - I need to stick to my guns on what I see as risky behavior! By Emma? No - she was gesturing to climb the steps within minutes!! I sent her home with Scott for lunch and a nap!

She apparently fell asleep in the car on the way home, while we are both seperately worried about head trauma etc!! When I got home a few minutes later we put a heavily sleeping Emma to bed and put on the pulse-ox with a different set of concerns than normal!!

So far so good - she's up and about, if not a little whiny! As for me, I don't know how I will cope with a mini-Scott running around getting in to trouble!!

Finally!

Scott had no plans today - that he knew of!! With only 5 weekends left til my due date, and my own mobility increasingly limited I was thrilled to finally have a Saturday when Scott was not doing something else. (Even though he's not had a regular job, he's always busy!!)

We desperately needed to do some basic shopping (diapers etc) so I made a list, well 4 to be precise! One list for each of the stores we needed to visit. We started out with some basic household items, a few things I will need in the hospital and right after. Then we hit the supermarkets! I thought it would be prudent to buy in some extra food for after the hospital, like meats that I can freeze.

We didn't get home until nap-time, so Emma went straight to bed. While she slept I rested - there's no way I could spend a morning shopping by myself, with Emma or not!! And Scott made short work of building Emma's toddler bed (crib mattress in a bed). Now I know we could have just taken the crib out and left her on the mattress on the floor, except she has so many electrical cords running around her bed for the various equipment that I wouldn't feel safe.

So, we bit the bullet and did it. Emma helped Scott dismantle the crib as we sung a song about Emma being a 'big girl'!! She now points to herself if you ask "Who's a big girl?" So cute!

Then she helped us carry the new bed in and as soon as it was set-up she climbed right on (phew, not too high!) and seemed pretty happy. She picked up her little Bible and started to 'read'! I stuck some more flowers on the wall, where the crib had been, which she promptly walked around 'smelling'!

And so finally, I have taken some pictures of the 'flower garden' room and here they are (including the tired Scott who passed out on the floor!!)...

View from the door

Changing station (one day it will be full of clothes, no medical supplies!)

The toy corner! (Emma loves the mirrors on the wall)

The big girl herself!!

I'm so excited for her. I just pray she doesn't fall out!! (It's so handy to have a nurse watching her all night!!)

More Emma

Scott and I are not sure if it's just because we are her parents, or if Emma really is super-cute and hilarious to be around. She has some quirky little habits and mannerisms, and because she always looks so dead-pan it seems to make them funnier. She seems to pick up something new every few days and loves to get a laugh out of us.

This afternoon she was pretty whiny and drove me nuts, until Scott came home and gave me a break. After we'd eaten our dinner she seemed to get a second wind and allowed me to capture some of it on video. It might not be as funny to everyone else, but she's usually such a calm, deliberate child that the wacky stuff is great to watch.

While I was waiting for Scott to come home I was dreaming of either Outback cheese fries or Indian food, but not wanting to disturb him if he was driving I kept it to myself. When he did get home he had Indian food with him!! I love that man of mine!!

Down Time

It is a relief to have arrived at a quieter time in our schedule. And just in time - with only 4 1/2 weeks to go til my due date I am finding everything more challenging. This morning I must have got out of the wrong side of the bed, but I got a break for a midwife appointment as Grandma Ellen and cousin Josiah came over to play with Emma. The baby is doing fine, which was no surprise to me as he is moving around constantly!!

Here are some videos from last night, and todays occupational therapy...

This is so cute...

Our nightly ritual for going upstairs to bed...

(Listen for Scott at the end of the clip!!!)

The cutest cry for help...

(Note the mature grasp of the pen - Melissa says it's something you don't usually see until 3+ years!)

There's more...

Dr. E., the orthopedic surgeon that ordered the CT scan called after he looked at the pictures. He was wrong about the atlas vertebrae (glad we didn't worry!!) but there are some anomalies. It "looks" like the circle formed by the bone is incomplete, or "cleft", which may or may not be causing the torticolis.

He seemed comfortable in saying that her torticolis is not purely muscle-based, while most are. It seems most likely that a number of factors are playing into it. As she is able to keep her head straight when she is not tired, I think muscle weakness is a big part. When she starts to droop or fall we'll need to try and give her more quiet things to do. (She had a bruise above her eye yesterday after falling against the bookcase!)

As the doctor suggested, we are keeping our appointment with his colleague on September 10th (pregnancy permitting!!) and will hopefully know what, if any, further action should be taken.

We also had a speech therapy session today and Emma is continuing to do well. She tries to repeat every word you ask her too, which is apparently great, even if she misses the mark a bit. She does have limited tongue movement (for example, she can't poke her tongue out to the right. We don't know if that's permanent.) and who knows what else may be affected by the Moebius, but we have faith she will continue to amaze us! And for sure, she has no problem communicating her wishes!!!

Lost then found

If you can believe it someone handed my phone in at the hospital!! All we (Scott!) have to do is pick it up and they can reactivate it!! Sweet.

Shame no-one did that when I lost my Razr phone!!

We did it!!!

(That's a Dora reference for the parents among you!!)

We woke Emma up at 6.15am this morning and when she saw us both standing there she laughed - we took it as a good sign!! The drive to the hospital went well, and we both threw up constant prayers!!

At the hospital we registered and then spent about an hour waiting in a sedation room trying to keep Emma in a good mood. A member of the team came in with a model CT scanner which we used to show Emma what was going to happen - thanks to Minnie Mouse who was our "patient"!

Scott took Emma in about 8.45am and she immediately clocked the Dora DVD and was really into it. Apparently she was great until they strapped her arms down!! They also placed blocks either side of her head and a strap across it. She fussed for a while, but Scott held the DVD player as close to her face as he could, and by all reports she was still long enough to get all the pictures they needed!!

Praise the Lord!

We were home by 10am, when I discovered I lost my cellphone somewhere, again. Yes, the second phone in a year - pregnancy hormones are incredibly destructive to brain cells!! We tried to call it but whoever had it just kept hanging up. So I called and cancelled the SIM card and ordered a cheap replacement (i.e. less $ than an insurance deductible!). It should be here by the weekend. In the meantime you'll have to call the house or leave a message with Scott (he'll love that!!).

Denise, the customer service rep was so nice and concurred that, through no fault of my own, due to pregnancy, I had lost the phone, or even it had been stolen!! She also said that my husband should take me to lunch to get over the stress!! (Not happening!!)

But a great morning in all!

It's on!

We are heading to the hospital tomorrow to attempt the CT scan without sedation or anesthesia. Emma will need to lay perfectly still for at least 2 minutes. It could go either way!

Our secret weapon is the DVD we purchased tonight with Dora, Diego, Wonderpets etc on it!

However we can not be sure of anything, so we are praying hard for peace and calm to fill her little body and mind during the procedure. It would be some relief if we could just do it and move on.

New Day

So this morning Scott headed down to the city to meet with Paul and see if he could get on this job. This is about as close to a "job interview" as I think carpenters get! all their dealing seem to be through contacts on the phone.

It doesn't look too promising, he took his name for a job starting in a couple of weeks, but wouldn't promise him anything. He also said the best thing he could do is to keep showing his face - what does that mean?!!

It's a little disappointing, but not the end of the world. Scott needs 13 weeks of union work between now and February for our benefits to remain intact. Unlike some workers, we'd prefer that he had full-time work the whole time, rather than just the minimum to get benefits!

What is cool is that Emma's physical therapist was here and we were discussing the situation and she remarked about how calm I was taking everything. (Even Pastor Bob has commented on it!) I said I wasn't always totally calm, but we understand God has a purpose in the circumstances and we know to trust his provision. I am thankful that we have enough faith to be able to demonstrate God's peace, some if not all the time!

Therapy was good. We discussed the whole neck thing and I think that if Scott is off tomorrow perhaps we'll try the un-sedated CT. If she won't stay still we'll have to rethink our options - I don't see general anesthetic as an option unless there is a pressing medical need. We can revisit it in a few months when things are hopefully settled!

Emma did really good with the exercises we had her do and was walking around outside on the uneven grass. She seemed to get pretty tired and started to fall over more and her head was lolling. Merle has not really seen her like that and was a bit surprised. I've often mentioned the low muscle tone that is a characteristic of Moebius, and it seems that she gets weaker maybe a bit sooner than other kids, when she tires. no big deal, I just have to make sure she doesn't hurt herself!!

Thanks for praying with us.

Joys of parenthood

I am sure I spend too much time on the internet looking for information on how to do this that and the other. I'm probably addicted! I often find myself second guessing my decisions and look up "expert opinions" to confirm or deny!

Last night I found myself looking up moving a baby from the crib to a bed! A little late since we already moved her out of the crib, and of course it said better to wait till they are closer to 3!! However, each night and nap time I have put her on the mattress she has stayed put and gone to sleep. She seems to be pretty mature for her age (or so I'm told) so this may be a good time after all - before the terrible twos!!


She doesn't spring out of bed when she wakes up, so I can usually get there while she is stirring (the CPAP is quite noisy!!) Yesterday though I let her get up when she woke up after nap and it was too soon so I'll have to make sure to avoid that.

If she does this well for the rest of the week we'll take the crib out and put the bed in on the weekend.

I'm finding it far tougher to handle my parental jealousy. What? Emma's favorite word right now is Dad or Daddy, often accompanied with the sign for Daddy. She says it as soon as she wakes up, when we enter the house, if Scott is with us and gets out of the car - anywhere, anytime! Does she says Mummy or even Mommy? No. Does she sign Mummy? No. It's amazing that she will even point to me in a picture!!

Really though, I do love it that she loves Scott so much. He's been pretty busy lately but I have asked him to be home for dinner each night so that I can get a break, eat a bit healthier and Emma can see the object of her affection! Today they went outside (in 91f!) to play while I made dinner.

The latest

We met with Emma''s neurologist today and she was very happy with her progress. Her head (and brain) are growing well and developmentally she is doing great. In fact she said we don't need to come back to that department, she is past the age of things they would want to monitor and showing no signs of any dysfunction.

It was a great visit and Emma had her cracking up with her sense of humor.

She also took a look at the x-rays of her neck and said it's hard to tell if the vertebrae is fused to the skull, or if it could just be the way her head was positioned for the x-ray!! (Quite a significant suggestion). When I told Scott what she had said he told me they had tilted her head back for the x-ray, so it's quite possible it could look like that!

As getting a toddler to hold perfectly still for 2 minutes is tough at any time, we are leaning toward postponing the CT scan until she would not need general anesthetic. And if Scott does get work, neither of us would be able to go in with her! In the meantime it might be worth getting additional regular x-rays with better positioning to see if that reveals more. (I won't be amused if they gave us such a dramatic diagnosis for no reason!)

I'm waiting to hear back from the orthopedic surgeon, so I'll keep you posted!!

Prayer Needs

We are very hopeful today as Scott finally got a call back from a company in the city that he'd heard was hiring. Apparently they are working on a building across the street from Emma's hospital!! The hiring manager told Scott to come down there tomorrow morning and he would have a better chance of getting hired if he met him face to face. As one of Scott's work buddies put it they are going to eat him up!!! I don't know many people who look stronger and healthier than Scott!!

Oh, and if that wasn't a great start, the guys name is [wait for it] Paul Christman!!!!!!!!! We're taking that as a good sign!! Please join us in praying for God's will here - job or not.

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On the flip side I got a call from the hospital to get some details before Wednesday's CT scan. I went through all of Emma's diagnoses, surgeries etc and informed them about her sleep apnea. I few minutes after I got a call back saying that because of the apnea she would need anesthesia to have the scan!!

We were both independently questioning the sedation part in the first place! Putting her under anesthesia seems excessive without knowing how urgent the scan is. If there is a chance that the existing vertebrae are being damaged then we need to do something, but if we are just looking for an answer it does not seem to justify this extreme.

A little while later I got a third call to see if we thought Emma could do the scan without any sedation. Well, that's the $64,000 question! She usually flips out when you try and put her down for a weight check, let alone an x-ray or scan! They did say we could bring a DVD player to occupy her. Could Dora really be that powerful?

I am seeing her neurologist today and I've put in an email to her pulmonary team to see what they think, but we are really seeking God for an answer here. Please pray with us.

In the air...

Art came over this afternoon to fix the air conditioning. It showed no signs of a fault and started right up when he turned it on!! Apparently it may have over heated due to a 20f+ difference between outside and the temp we had it set to inside.

It probably would've worked yesterday after it cooled down, but don't we appreciate it ever so much more now!!!