Waiting game

^{Colossians 1: 10-12}

¹⁰And we pray this in order that you may live a life worthy of the Lord and may please him in every way: bearing fruit in every good work, growing in the knowledge of God, ¹¹being strengthened with all power according to his glorious might so that you may have great endurance and patience, and joyfully ¹²giving thanks to the Father, who has qualified you to share in the inheritance of the saints in the kingdom of light.

I am still learning this patience thing, yes, even after all this time! I think that one reason that being patient is so difficult is that you have to lay down a lot of other things in order to fully take hold of it. For example, it is tough to be patient and wait upon the Lord if you are full of fear about the future, or find it difficult to have peace over circumstances you can not control nor predict.

To what, specifically, am I referring? Scott's work situation. the "middle of the week" last week, became "the end of the week" which turned into "the beginning of next week" which is now "the middle of the week"!!

(It's not that we doubt it will happen, it's just incredibly frustrating to not be able to count on making a schedule, or the regular income. Thankfully Scott does still have work to do, so I can worry less about finances!!)

I suppose you could also include the pregnancy as another area requiring patience! Waiting for this baby to make his move into the big wide world is quite a challenge.

For me I think it is hard to handle because I can in no way impact the timing, on either issue! And I fear that they will both be resolved at the same time, which would be a nightmare - Scott would have to go back to work when I need him the most! I expect that would be hard on him too.

One good thing is that we are supposed to get our TV back today! It was fixed in one day, but because of a billing issue with the warranty they wouldn't give it back until they could bill the company! Is nothing ever simple??!!

One thing is for sure, it is wonderful to know that Scott and I can go through difficult times and work together to keep our joy and even become stronger in our marriage. There certainly are blessings to be found in any situation!

Yesterday in his sermon, PB read a speech he'd written for his parents golden wedding anniversary. In it he told them how their lives had shaped who he is today. As a parent I can imagine the joy it brought them. It also really made us consider how we handle things in our lives will impact our children.

I don't think I can ever remember being aware of any financial struggles that my parents faced, but they must have had some at some time! But I certainly learned many good principles that I apply in our family. I hope that we can allow our children the same feeling of security, even if it is through maintaining joy and hope in tough times, and good stewardship through the good times.

Getting through difficulties should not be the only aim, after all, there will always be more! It is how we handle said difficulties and what we can learn that should be our aim.



Romans 5: 3-5

³Not only so, but we also rejoice in our sufferings, because we know that suffering produces perseverance; ⁴perseverance, character; and character, hope. ⁵And hope does not disappoint us, because God has poured out his love into our hearts by the Holy Spirit, whom he has given us.

Some Sundays are easier than others to get out of bed. Today was one of the tough ones! We didn't go to bed particularly late, but I didn't nap yesterday so I was tired. (Scott will always sleep until the last minute!!)

Emma woke up shortly after 6am and I wasted no time in bringing her into our bed and putting her back to sleep. Trouble was she occupied more than half of my pillow, so I was huddled on the edge of the bed.

We managed to get to church in time for me to prepare the sound booth for the service. (Somehow I found myself involved in running the sound system and working with the musicians on the technical side! Apparently no-one noticed I do not have any musical tendencies!!)

Emma was in the nursery with our friends today, so Scott was able to listen to the sermon, as did I. Following service I went to get her and she was pretty tired, so I got a big, long hug! (Last time she barely acknowledged me and carried on playing!)

I went and sat with her in the lobby as we waited for Scott. Not long after sitting down little Joey, a 2 year old boy, came over and said "hi Emma!" It was so cute. I'm not sure if she didn't hear or was being shy, but she didn't respond! According to his mom, Emma was the one person he named when asked who he'd see at church!

Shortly after that, 2 1/2 yr old Nicholas came over and just stood there smiling!

I've seen Emma with the other kids and she loves to play with them when we're not around. I guess she just got shy when I was there.

Not to worry though. Scott got the ultimate prize today when she said "I love you" to him without being asked! (He's been teaching her to say it - I still get the sign language version!)

wedding day

This afternoon Scott and I were able to attend a wedding for two good friends. The last time I went to a wedding I was pregnant with Emma!! This time Emma stayed home with Grandma and Pops!

It is challenging to find an outfit for a wedding normally, so imagine the difficulty when you are 50lbs heavier and 9 months pregnant!! Still, I put together an outfit that was smart, comfortable and looked pretty decent!

Of course there was no way to minimize my huge belly (and it is huge, and round!) so I got asked plenty of times when I was due. I resisted the urge (and request of friends) to respond with "I'm not pregnant!" But the real answer "In 10 days." got quite a shocked response from most people anyway!

There was a great ceremony on a small patio, for which the rain held of, just. Partway in I stepped up to take the ring bearer (my Godson) to the potty! I tried to be discreet, but that's like an elephant trying to tiptoe through a glass shop!

During the cocktail hour (when the wedding party go for photos and the guests have drinks and h'or deuvres) I really felt like the waiters were coming over to me fairly constantly. I'd normally be thrilled, but I just can't eat as much as normal!

The meal was great and the DJ played a great selection of big band music to accompany it. He also had some great games and ice breakers that I have not seen before (in all the many weddings I've attended!! Not!)

The brides father passed away a year ago and so she danced with her mom instead, to a song that her dad would have picked. They did him proud. I doubt there was a dry eye in the house. Later Scott and I shared that we'd both also been thinking about the day when Scott will dance with Emma at her wedding. I can only imagine how tough it will be for him to give his baby girl away, and the man that will persuade him to do so!

The dancing and party didn't really get going for the guests until about 8pm, so I got to have a bit of a boogie (apparently it can help bring on labor!!) and Scott and I had a dance together before we headed out to get Emma to bed. Probably just as well - I can't hang with the young people like I used to!

It would have been nice to stay longer, but the lot of a parent is a tough one! Not to mention my back probably wouldn't have obliged for much longer.

The more times I discuss the pregnancy with people, the more anxious I get that this baby is going to sit tight until he is dragged out (kind of like getting Scott out of bed in the morning!) And while the bun is in the oven, it will keep getting bigger and bigger!! I pray that won't be the case.

Busy day

This morning I had a midwife appointment so Grandma Ellen came to watch Emma. Thankfully Emma slept great last night, with no crying at all! This morning she was more like the old Emma and so cute! I was happy to leave her with Grandma though, since I can't even sit on the floor to play with her now. She gets bored with me quickly!!

Rather than being upset I was leaving she seemed fine with the exchange, and even came to wave me off at the door!

My appointment went well and I couldn't resist accepting Moon's (my midwife is called Moon) offer of checking my cervix. I'm constantly wondering if each twinge is the start of labor!! With Emma I was induced so I never needed to recognize the signs.

At 38 1/2 weeks along I'm still only 1cm and long (if you don't know what that means, you don't need to know!!), so the baby isn't coming out very soon! His head is not down all the way yet, but I read that that happens later in a second pregnancy anyway.

I won't bother getting checked again until my due date - it's really not pleasant! At that point though I will use any tactics to bring on labor!! I do not want to get to the point where I need to be induced.

Then it was time for Emma to have occupational therapy with Melissa. She brings this huge bag with all kinds of toys to encourage Emma's motor skills. One of the things Emma likes is the bubbles. She doesn't chase them, but wants to blow them. I really didn't think she'd ever be able to, since she can't purse her lips, but she really surprised us today when not only was she bringing her lips much closer to blow, but it actually produced bubbles!!

This is really exciting because it shows that she is gaining more awareness and control of her jaw and lower lip. The greater manipulation and control she has, the better her speech will get and hopefully she will stop having the apnea!!

I emailed her pulmonologist and his response was "EXCELLENT!!!" Exactly.

Little steps start a big journey!!

Wait over

We had to get up early today as Emma had her follow up with the orthopedic surgeon at the hospital. Our appointment was at 8.40am, but we left at 7.30am to allow for all the traffic you get in school time! We signed in by 8.30am.

While we were waiting Emma was drawing in my notepad at the little baby table. Playhouse Disney was playing on the TV and thankfully Scott was there to follow her around when she got restless.

As the wait went on we started talking to a family sitting near us. They had a 12 year old boy (who I wouldn't have pegged for more than 10) who has been fighting bone cancer for 8 years. They live in West Point NY, so they have a long commute for appointments but feel it's worth it. We shared our stories in part and it was nice to see that other people also see the blessings that come from such trials.

When it got to 9.30am they went to see why they hadn't been seen - their appointment was at 8.15 with the same doctor! Apparently there was a shortage of rooms. Emma went in a bit before 10.30am, but we waited in the room for a while before we saw a doctor.

I had Emma's markers in my bag and let her draw with them on the paper they use to cover the bed. As you can see, Emma wanted to let them know how frustrated she was at the long wait...
Really though, she was so well behaved, especially after such a long wait.

Finally we saw the doctor (and his 3 followers) to discuss the results of the CT scan. He had not met Emma before so he checked her range of motion and relevant body parts to confirm their findings.

After careful review of the CT scan he could not find any serious problems! A little asymmetry maybe, but nothing too important. He concluded that the imbalance in her neck is probably due to the Moebius and unless it gets worse (ie. we see her head falling more often etc) there's really nothing they can do. Likely one side is stronger than the other, so when she gets fatigued the left side of her neck pulls her head down and the right can't compete.

In all this is good news, and shouldn't get worse. Physical Therapy may improve it, but "she will do great!"

Now back to fixing the problem with her bowels....

Oh what a night

I'm pleased to report that Emma is showing little signs of still being sick. Her temperature is back down consistently and her heart rate is at normal sleep levels, that is when she is sleeping! Throughout the night last night she seemed to me to be crying almost constantly.

I avoided going in to her room until 2am when I just couldn't take anymore. Her nurse suggested that she might be hungry - fair given that she'd only had Pedialyte all day! I grabbed some formula and gave her half a feed. She was still crying and I lay my head down by hers - she grabbed my neck and held on tight!

Still crying I asked the nurse to turn her CD back on (why they turn it off..?). As soon as she did Emma calmed immediately! The CD is of instrumental hymns and she has had it playing since she was a newborn. I think it is very calming for her.

Eventually I was able to extract myself from her grip and went back to bed!

I heard her crying again at 5.30am and waited at least 15 minutes. Apparently as soon as I opened my bedroom door she pointed toward our room and said "eh". I went in and she calmed immediately.

Not good. She's been like this during the day too - crying desperately when I won't hold her, and sometimes even doing it to Scott. Last night we were at a friends house and she had a fit when we wouldn't hold her.

Naively I assumed that was reasonable as it was almost bedtime and she's sick. I now realize we are dealing with tantrums. And no ordinary tantrums - tug on your guilt-ridden emotional heartstring tantrums!! Yes, I'm sure more experienced parents around us probably knew that! I bet Scott did too!! Sometimes I take a while to catch on!

I am really dealing with some guilt about having another baby. Is that nuts? I worry I won't be able to really give her all the support she will need and that she won't feel loved. Hopefully this is just par for the course and it will all work out! I will be trying to address this super-clingyness pronto, not least because I simply don't have the energy to be at her beck and call.

Emma Update

Every morning at 6am I go into Emma's room and get a report from her nurse on how the night went. (Except when Scott goes in!!) It's usually pretty standard, no problems and she usually sleeps through. Right now it's a little more detailed because she is sick, I need to find out when/if she got Tylenol, how the feed went, her temp. etc.

When we discuss it in her room you can tell as her heart rate climbs that she can hear us the longer the conversation is. Unfortunately the nurses don't seem to realize that it means she'll wake up pretty soon after they leave!

Today as we talked Emma started to fuss because the strap for her CPAP was over her eyes. I moved it for her and she stopped fussing, and did not wake up. In the process her pacifier had fallen out of her mouth. What she did next was too funny - she poked her tongue out and pointed to it with an "eh"! She does this during the day when she wants her pacifier!

Of course the nurse obliged, as I'm sure she does all night. I have been giving it to her more during the day because she's been so unhappy, so of course now she wants it whenever! We had got it down to just nap and bedtime. Back to square one on that I guess.

I will also admit I've been using the TV as a pacifier more too. (Of course right now its only a 19" pacifier!!) I know it's not right, but it's how I'm coping with a grumpy child and limited energy and mobility. Go ahead, judge me!! I do help her read, color and play Playdoh too, so I'm not totally negligent!

Thankfully Emma seemed to be in a better mood today and did sleep until 6.45am which is the longest she's slept since last week. She is tolerating being vented well, and the pedialyte doesn't give her gas. I think her temp. is going down, but of the 4 thermometers we have the nurse tells me none are working!

Lately Scott has been putting Emma down for naps, when he's here, and to bed, so that she does not get all whacked out when I'm away for a few days. She's getting better, but she doesn't make it easy for him! I just hope she is feeling 100% before I have the baby. I'd feel super guilty if I wasn't around for her.

Who knows?

I seem to be having one of those weeks where no-one seems to have the answers! (It's okay, I realize only God has all the answers, but it is still frustrating when people who should know what they are talking about don't!)

Today I emailed Emma's GI doctor about our ER visit yesterday. He checked out the x-ray (so handy they can all share her records!!) and said she isn't constipated, but full of gas!! He probably does know, as that's his specialty! Anyway, we're giving her guts a rest tomorrow and only feeding her Pedialyte all day.

I guess the pediatrician and ER doctor gave their best guess!!!

And still no-one knows what is causing her high temperature!

And then there's Scott's work. Supposedly he would be going back "the middle of the week" which is now "by the end of the week." I acknowledge that his boss could be getting the run around from the people hiring his company, but COME ON!!

Not willing to take any chances Scott is going to renew his scaffolding license next week as there is apparently lots of work in that part of the union - building scaffolding rigs for other people to work on! The hours are often wacky, but I appreciate that Scott is willing to do whatever's necessary to provide for his family.

I don't want to know the future (much), I just want to know that we are making the right decisions and actions. I guess there's no way to know for sure!!

Diagnosis

We decided last night to take Emma to the ER today. She was so sleepy yesterday and kept waking up in the evening, crying and inconsolable.

When her nurse came she listened to her belly for bowel sounds, as they do throughout each night and she really didn't hear anything. Since Emma's bowel is 'special' (after being outside her body for 9 months!) we won't take any chances if there looks like a potential problem.

We gave her some laxative which created a lot of gas but no movement, that was since Thursday or Friday. So it seemed there was less than normal output all around.

We skipped her last feed of the day and tried to run the overnight feed, which goes in really slow, but not long after it started she was waking in pain again.

This morning we brought her into our bed where she was fine mostly but had spells of being in pain and very upset. We decided that it was not worth waiting another 24 hours with her being so unhappy and headed out around 7.30am. Since Children's has a full history of her medical needs we go there rather than to a closer hospital where we would likely have to educate the staff on Moebius, and maybe the other things!

We didn't have a long wait at the hospital, well, not for a room! We were there for about 3 hours total. The doctors took an x-ray of her belly to look for potential blockages, and also took a urine sample - by catheter!!! (Fun!) She also had to have her rectal temp. taken twice. She was not amused!!

In the downtime we had the TV on and she was pretty content (thank goodness she has TV shows she likes that much!!).

The results; no urinary tract infection detected, but a culture will be complete in 24 hours; she did have a small amount of stool in her bowel that was likely hard and causing her the pain. The temp. is likely a virus of unknown origin! So they sent us home with a prescription for stool softener and more Tylenol!!

Even though the problem seems fairly simple it is clearly a big deal for Emma and for that reason I don't mind spending time in the hospital. (I was incredibly uncomfortable sitting in the hard chairs though, so I snuggled with Emma on the gurney a couple times!!)

She went down for a nap after we got home and I gave her the meds, and within one hour she'd pooped!! Thank goodness. Perhaps we'll all get a better night's sleep tonight!!

I gave in and called the doctor!! As tomorrow is a holiday I knew I'd have to wait until Tuesday before I could make an appointment, so I used the magic beeper number!!

A nurse called me back to get the scoop on Emma's problem. I very much dislike describing medical situations on the phone, especially to people who aren't very familiar with her conditions. So I started at the beginning:
the fever, which led to
the high heart rate, which led to
sleep apnea and the pulse ox, and then
the tube feeding, which led to
the fundoplication surgery

I never even mentioned the Moebius Syndrome, which is only relevant because it underlays the other things, but also they make a lot of facial expressions to gauge the level of pain!

I don't know if the nurse kept up with me, but she told me she'd call the doctor and get back to me!

In a few minutes the doctor himself called me! there are about 8 doctors at the pediatricians office we use and this was one we've never met, of course. I couldn't tell if he was familiar with her records, but he seemed to understand when I did mention the Moebius Syndrome.

I went through the other stuff again, and he suggested a possible cause that I had picked up online yesterday. In girls, fevers with no other symptoms are often Urinary Tract Infections. Since Emma gets very distressed when we press on her belly and seems to be most agitated after a feed (when she usually pees) I think it's a good bet. I also know how painful they can be!!

So, what now? We are trying to manage her temperature and keep her comfortable. Thankfully Dorothy is the nurse on tonight, and for some reason I can rest a little easier with her. Maybe because she will come get me if there is a problem, rather than just trying to quiet Emma down.

Tomorrow will be tough. Scott's going to be doing some work for someone and Emma could be just as grumpy. I love the cuddle part, but I am very uncomfortable sitting upright, and well, you can imagine! And with the TV still out (did I mention we don't have all the channels we usually use without it!!), well, I'm going to need a ton of patience!!

The doctor also said that if she becomes more lethargic (she slept a lot today) or doesn't have periods of happiness then we might want to take her to the emergency room. Otherwise we'll go to the doctors on Tuesday.

Of course!!

Yesterday morning I started a post about how Emma was grumpy and tired, and of course the TV stopped working altogether! I opted not to post it because, well, I figured you wouldn't care. Turns out it was going to get worse!!

After taking a 3 hours nap yesterday (Emma and me!!) Emma was still really fussy and felt very hot. I took her temp. and it was in a normal range. We headed out to a friends barbecue about 5pm, and I had dressed Emma in shorts and tank top since it was still daytime. I did take some pants and a t-shirt for when it started to get darker.

It seems I underestimated the hunger of the bugs around here, and in addition to the one bite on her arm from Friday, she came home with 5 more! When we did get her home about 8pm her temperature was over 100f. I gave her some Tylenol (paracetamol) to reduce the fever and put her to bed.

I hope Toby didn't mind being Emma's seat!!

Although she was sleeping her heart rate was about 140bpm, when usually she will be at 90bpm for a good restful sleep. It didn't change much over time, but I left her with the nurse and clear instructions. Her temp. had dropped into the high 90s.

At 2am I had a potty trip, and stopped by Emma's room. Her temp. was back up and she'd just been given more Tylenol. Elizabeth reported that she was scratching at her body and very restless. I picked her up and rocked her in the chair for a while hoping she might sleep better.

The nurse offered to take her, but understood that I just wanted to hold my baby!! Before I went back to sleep I prayed over her - something I don't do very often. Emma hasn't been sick in a long while, and even then I don't recall any unexplained fevers.

She slept until about 6am and was sitting up in bed with her Bible. I didn't want to take her to church today, especially as I don't want to share any viruses with other kids! However, both Scott and I needed to be there, so we took her and I planned to bring her home as early as I could get out.

She ended up sleeping on us most of the service so I stayed until the end and left right away. Her head felt so hot I was really worried. Scott got a ride home a little while later!!

Her temp. was 99f so I gave her more Tylenol I laid down with Emma on our bed to get her to take a nap, and she slept there for a couple of hours.

In the meantime we tried to turn the TV on again and this time it came on. Why does that matter? There isn't much you can do with a sick grumpy child, especially when one of you is painting a room and the other can not move easily!! Praise the Lord it is working, for now!!

I hope she feels better soon, I hate being so helpless, and useless!!

Smooth Course

Nothing is ever simple, right?! The TV took 5 hours to turn on today!! I called the repair company only to be told they weren't coming because we aren't in their service area. Nice! I called the store back and they scheduled us with a new company for Monday - apparently this company work on holidays too!

As for the weekend, we'll see how it goes. We have plenty going on.

Scott is going to paint the baby's bedroom this weekend. It is such a shame to paint over the awesome stripes our friend painted for Emma, but I have a safari theme in mind!! (I'm all about themes after Emma's room turned out so good. I'm not going to buy all the paraphenalia though, just have a color scheme and some cute animal stickers on the walls! The best part is that we already have the colors from other rooms, so we shouldn't have to spend any money!!

The baby will be in our room initially, until the rate of feedings slows down!! So I'll move the furniture this weekend and get it all set up. Then all we need to do is a thorough clean of the entire house - that's all!!

It looks like Scott will be back to work in the middle of next week, or so his boss says!! I'm reserving my joy until he actually gets on site. We are so hopeful though! The promise of a regular schedule, wage and consistent work. He might not be able to take time off when the baby's born, but we'll muddle through.

I'm still nervous about the birth of the baby. Not so much the head size (it's relatively big regardless!!), but just that the baby is healthy we don't have major complications. I guess it is normal to be nervous given the hard time Emma had, but I don't want to miss the joy of the time altogether. I'm trying not to think about Emma's reaction to the baby at all!!

Please keep us in your prayers.

No TV!!

We bought our living room TV on Christmas eve, 2006, just a day or two after we moved into our house. We totally splurged as we already had a 32 " tube tv but I think we HAD to get it then so we could watch the Eagles Christmas day game!!

Since then we have really appreciated it, especially the high-definition. If you've never compared HD to regular TV it is like putting on glasses when you have poor eyesight!!

Anyway, we love to have gameday gatherings and just in general watching TV!!

About a week ago when you turned the power on it was taking like 5 minutes to come on! Tonight it took at least 75 minutes to come on!!! The TV may be more important to us than it should be. Emma watches during her tube feeds, so she keeps still and we watch the sports regularly.

So today we stopped by a repair shop who quoted us $25 to estimate the repairs!! Not looking forward to paying anything to fix it, let alone maybe replacing it. So as a last resort i hunted down the packet we got with the TV, which I had kept with all the manuals.

And there it was, the original receipt listing a 4-year service plan!! Bingo!!

We called the 24 hour phone number and after declining to wait until September 17 (I did mention the 75 minute wait!!) they set us up with a local repair service who are coming tomorrow!!! And it will all be free!!!

We don't usually buy warranties, but sometimes a warranty just pays for itself!!

Service Review

Emma receives in-home therapy (physical, occupational and speech) through a government program called Early Intervention. It is a free service for qualified children 0-3yrs, those that show developmental delays. Every 3 months we review her services and progress, today was her 6 month review.

Emma has shown the most progress in gross motor skills - walking! But she is also showing progress in speech and feeding. We requested an increase in speech therapy sessions, which include both speech and feeding, from every two weeks to weekly and it was approved.

We also requested a consultation with a feeding specialist, which was approved, so he will come here and observe Emma, making recommendations on how we can encourage her to eat. Apparently there may be anatomical reasons why she prefers to eat standing up, to sitting in the chair.

So, this is really great news as I'll have extra support with Emma's progress, especially with the new baby in the mix soon. We owe a big thanks to Emma's therapists who really go to bat for us and give arguments for whatever we need. Considering how tough the whole medical/insurance system is here, our experience with this gov't program has been awesome and really helpful for Emma.

Big head

This morning the three of us went to my weekly midwife check-up. She went through the stages of labor using a book with pictures, like we saw at the birthing classes we took before Emma. I asked her to confirm that the baby was indeed head down - the way he moves I can't tell!

After pressing down on my belly she confirmed the baby is head down, AND then added that it is a big head!!! Quickly she regretted saying the last part - not something a pregnant woman wants hear, especially if she's going to labor without pain meds!!! We all laughed about it of course, but I was also horrified!!

In all honesty the weight of the baby is of secondary importance to the size of the head! A baby weighing 7lbs with a big head is no easier to deliver than a 9lb baby with the same size head!! I have a feeling though that the baby will be a heavy weight, with a big head!!

And the kicker: The pain caused by the head is right at the end of labor, far to late to get any pain meds!! So I will have to decide much earlier if I'm going to go through with it as planned or cave and get the epidural!

As for being close to labor, they would prefer the baby come after 38 weeks, but wouldn't stop a labor at this point. I also won't get "checked" until my due date, so I won't know if or how much I'm dilated prior to that. I figure that's a good thing, since you can be 2/3cm dilated for weeks before labor starts and I'm not good at waiting!!

__________________

On the other side of things, Emma had a speech therapy session today. Brooke is really pleased with her speech and encouraged us to keep having her say what she wants with her mouth before responding. It's tough to remember, especially when she points and says "eh" incessantly to get what she wants!!

Feeding has become a struggle. She doesn't want baby food, which I think is because it is bland tasting, and prefers to sample our food. So we are going to try and give her some soft solids like cooked veggies and pastas. Brooke assures me she won't choke, but may gag - it won't be pretty but she has to learn how to manipulate the food in her mouth.

Today we used her love of the formula she is fed by g-tube and mixed it with baby cereal to make a paste. She did pretty well with eating it, so that was encouraging.

I will confess that on top of all the other emotional stress I have been very frustrated with Emma's slow feeding progress (slow being my perception). I just worry about how much time I will [not] have to persevere with it. I'm hopeful Scott will be available to help more, once the work situation reaches a more consistent place.

I can only assume that I would be bored if we didn't have so much going on!!!

Counting Down

Today is September 1. My due date is September 22. That leaves just 21 days (give or take!) before we have a second child! The count down is on, for real. At 37 weeks, the baby is "full term" and should not have any problems if it comes any time now.

I have been watching some of the baby birth shows that are on TV at lunch time, trying to get me a little more prepared for the ordeal. I want to see the different scenarios so that I am not going just on my own previous experience. Hope for the best, prepare for the worst!!

A few of the c-section babies in the shows aspirate the fluid and end up in the NICU for a week or so. The parents speak of the ordeal that is. At least I think we can handle a little drama!

Last night, before sleeping Scott and I lay in bed watching football, and simultaneously watching the baby make the most pronounced movements in my belly. I am going to try and get it on video, because it really is cool and weird at the same time. I'm a little concerned about how much more room he will need in there - I'm very stretched right now!!

Emma certainly seems to be acting a little more clingy than usual, to me. And we realized that the reason Daddy is so popular is that she calls me Daddy too! Even when she signs "Mummy" she says "Daddy"!! It's now become a challenge to have her say "Mummy" before I respond to what she wants. On the other hand, her "please" is becoming much more recognizable and she signs simultaneously!

I have also started nesting in earnest! Scott is expecting to come home one day and find me with twigs in my mouth (his words!)!!

Yesterday I forfeited my nap to tackle our filing system!! Somehow we just seem to accrue copious amounts of papers, mainly bills and statements!! It's not clear how long we should keep stuff, or what, for tax purposes so I err on the side of caution!!

I went out and got some new, bigger, binders to store what we need and put the rest in a pile for shredding. There is now a pile 6" high of papers, literally, waiting for shredding. We just need to get a shredder!! And a bag full of receipts that have been waiting since I burned out our last shredder!!

I then reorganized the closets and sideboard to make space for the unknown!

Today I'm going to get my bag started for the hospital!! My just-in-suitcase!!

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!!!

Message

We had another guest preacher this week, a different guy completely. Yet, his message perfectly followed on from last weeks!! It really hit me deeply and I wanted to share it because I think it's so relevant! I hope I do it justice, but forgive me if it is a little basic!!

Mark 2:1-12

Jesus Heals a Paralytic

¹A few days later, when Jesus again entered Capernaum, the people heard that he had come home. ²So many gathered that there was no room left, not even outside the door, and he preached the word to them. ³Some men came, bringing to him a paralytic, carried by four of them. ⁴Since they could not get him to Jesus because of the crowd, they made an opening in the roof above Jesus and, after digging through it, lowered the mat the paralyzed man was lying on. ⁵When Jesus saw their faith, he said to the paralytic, "Son, your sins are forgiven."

⁶Now some teachers of the law were sitting there, thinking to themselves, ⁷"Why does this fellow talk like that? He's blaspheming! Who can forgive sins but God alone?"

⁸Immediately Jesus knew in his spirit that this was what they were thinking in their hearts, and he said to them, "Why are you thinking these things? ⁹Which is easier: to say to the paralytic, 'Your sins are forgiven,' or to say, 'Get up, take your mat and walk'? ¹⁰But that you may know that the Son of Man has authority on earth to forgive sins . . . ." He said to the paralytic, ¹¹"I tell you, get up, take your mat and go home." ¹²He got up, took his mat and walked out in full view of them all. This amazed everyone and they praised God, saying, "We have never seen anything like this!"

I was pretty familiar with this story about Jesus, I think many people are. But today I was given a new perspective on something it teaches us - about the kind of people around us. There are 3 types of people in our lives:

People who stand in our way, and won't move to help us. The house where Jesus was, was full of people, so many that the paralytic man could not get in to see the Lord.

We often have to be determined to get the help we need and others may stand in our way intentionally or perhaps just because they are seeking things for themselves. Rather than giving up we should seek a new way, around them.

People who will go above and beyond to help us. The paralytic received help from friends who not only agreed to help get him to the house, but when they couldn't get through the door, they carried him up to the roof and lowered him down to see Jesus.

The scripture says "When Jesus saw their faith," - not their actions or the issue the paralytic was facing! Jesus saw the faith of all the men, faith that was demonstrated in their incredible actions.

We need to surround ourselves with people who support us, help us and show us the way to Jesus. Too often we do not ask others for help, maybe because we don't think they will, or because we are too proud to acknowledge that we need it. But God gave us each other because we often need help, whether it's physical, emotional, spiritual or financial.

And then there are those like the Pharisees, who sat on the sidelines making judgement and seeking to condemn for their own self-justification. Those are the people that often get under our skin the most, but are the ones that matter the least! In fact I heard someone say recently that people don't think about us nearly as much as we think they do!! So why worry what they may be thinking!!

Another key lesson in this story is that Jesus did not just heal the man, as he had wanted. Instead he focused on the mans spiritual health, and forgave his sins before healing him. Why is this significant? So often our issues seem straight forward, but there is often a deeper issue that we don't acknowledge or realize.

If our heart is focused on our relationship with God (which brings joy and peace to surpass all else) the worldly problems we face can be solved though looking with an eternal perspective - things that are temporary or do not impact our eternal future may pale into insignificance. Or we are changed through God's heart - if we can admit our selfishness and put others first we see things differently.

Scott quoted this scripture today:
33But seek first his kingdom and his righteousness, and all these things will be given to you as well. ³⁴Therefore do not worry about tomorrow, for tomorrow will worry about itself. Each day has enough trouble of its own. (Matthew 6: 33-34)

Words to live by.

And finally, it is not about me, or you or us. It's about God and through our struggles and triumphs may His glory be displayed!

Phew!!!

As you can imagine the house got pretty warm yesterday, about 83f by the time we went to bed! Thankfully some friends from church were able to lend us 2 window a/c units, one for our room and one for Emma's. That made sleeping much more comfortable, even if the rest of the house felt like a steam room!

As for sleeping, Emma took her nap on the crib mattress on the floor yesterday. She was dog-tired by the time I got her to her room so she was asleep before I put her on the mattress, but when she woke up she reached for her puppy and laid back down!! She really seems to like the independence of the bed.

At bed time we gave her a bath, and put her to bed tired, but not asleep. She wriggled around a bit, but once the CPAP head gear was on she settled down. The super-sensitive pulse-ox came in handy because we knew if she started moving around it would alarm!! (Maybe we should keep it, as a motion sensor!!) She fell asleep before too long and only changed positions when I moved her.

Katie was Emma's nurse last night and she's only been here a few times. She's really nice though and I feel very comfortable leaving Emma with her. When I went in to let her go in the morning I found Emma sitting on the end of her mattress playing with her kitchen and Katie sitting alongside her!! Apparently she was awake for a half hour before Katie finally gave in and let her get up! I don't blame her, when Emma starts to engage you, you just want to play with her!

During the night Emma fell of the bed once when her boppy pillow slid off the bed! She was a bit upset and disoriented but I guess it all worked out. We didn't hear a thing - the a/c units sound like a jet engine!!

I didn't sleep so well, though not due to the noise. Every time I got comfortable I would be woken by heartburn. I was also pretty thirsty and drinking water makes it worse!! I'll try for a nap this afternoon, I've been doing that alot, even just an hour is a huge help.

Hot as ...

Today the forecast is for nice weather and a temperature of about 87f. Any other time that would be a lovely forecast, everything sunny and bright that we can see from our 73f air conditioned house!! Not today - there's something wrong with our condenser unit, so it's already 77f in the living room, warmer upstairs.

Our A/C guy is away today and will come tomorrow but he thinks it needs a new part, which he likely won't get until MONDAY!!! I guess we'll be spending time out of the house this weekend!

I know Emma's nurses won't mind - they are usually wrapped up in blankets trying to stay warm in her room, while she is fine in a t-shirt and diaper!!

Today I took her mattress out of the crib and put it on the floor. I'm going to put her on it for nap time and overnight, see how we do in the "big-girl bed!" If it works out we've picked out an affordable toddler bed that fits the crib mattress. Since Emma is only 30" tall, she has plenty of room on that mattress until she is big enough to climb into a real twin bed.

We are enjoying this phase of her life, watching her grow and experience new things.

Last night when I came in from youth group Emma came running (I use the term loosely!) in to the kitchen to greet me. (She may have just been going into the kitchen and it was good timing, but I'll take it!) The heart swell of pride and love whenever I've been away from my little girl, huge, but to see her running around so full of energy is just awesome.

This morning when she woke up Scott brought her in to me and she lay hugging my neck for a few minutes before signing play and wriggling to get off the bed! We shut the baby gate and bathroom door and she went to play in her room. She kept coming back to give us a taste of something she made in her toy kitchen!

One time she had the frying pan up to her face and she bumped into our open door! She carried on walking, going smack into the corner of my dresser. She fell back onto her bum and then her head hit the wooden floor. Of course she cried and wanted Mummy, to which I obliged with a cuddle, while stifling my laughter - never a camera around when you need one!

Further information

As you can probably imagine I have been scouring the internet searching for possible syndromes that involve spine abnormalities, or even just incidences of problems with the cervical vertebrae, all to no avail!

I did talk it over with Emma's OT (Hi Melissa!!) and we agreed that we felt bad for pushing Emma so hard to turn her head etc when the poor girl has been doing far better than you would expect with such a fundamental flaw in her neck! That said, we will continue because she needs to have all the functionality that she can get!

Additionally it does seem likely that the Atlas vertebrae is there, otherwise how is she able to turn her head at all! It is most likely fused to the bone above it.

However, we won't know any of this for sure until September 10 - can you stand it??!! We have to wait a month to find out what the deal is. I suppose it's a good thing I have other stuff to keep me busy or I could go quite batty (British-ism for "nuts").

Emma does have a check-up on Monday (yes, another one) with her neurologist, so maybe we can get some more relevant information! I have already emailed her with this development but no response as yet.

None of her other doctors seem anything other than curious about this new fact - I emailed them all yesterday!! We will need to be extra careful for her CT scan on Wednesday as they are going to sedate her. With her obstructive sleep apnea a factor, we will be making sure she is closely monitored, and we'll take her CPAP with us.

Never a dull moment!!

Unbelieveable!

Today we had our appointment with the orthopedic surgeon, Dr. E. We originally scheduled the appointment as we were concerned that Emma was not able to walk due to hip rotation. 5 weeks ago she started walking, but we kept the appointment for two other reasons: the torticolis in her neck and curve in her torso, and the asymmetry in her skull.

As it turns out Dr. E. specializes in scoliosis and torso, so he really had no insight into the skull concerns, but did say genetics might be able to help.

With regard to the torticolis - I'm going to get technical, so stay with me...

Infant Torticolis is defined as such: When babies are born with infant torticolis they have neck muscles that are too short and tight. This limits their free head motion.

If this condition is not treated it can worsen over time. The shape of the skull and spine can change and this will put unneeded pressure on the eyes and brain.

When Emma is awake she has a slight tilt of her head to the left, but when she is tired her head practically lays on her left shoulder. We always thought this was due to tight muscles on the left side of her neck.

Dr. E said that in general torticolis just means having a bent neck. It can be muscular, as above, however after examining Emma he did not think her muscles were particularly tight. In fact, she was really well behaved for him and let him move her head all around!! Therefore he wanted to check that there was no underlying reason for her head tilt.

Emma got two x-rays of her neck, right then and we went back in to see the doctor. We were not expecting anything like the diagnosis we got, and I don't think he was either!!

(Stay with me here...)

The cervical spine is made up of the first seven vertebrae in the spine. It starts just below the skull and ends at the top of the thoracic spine.


The first two vertebral bodies in the cervical spine are called the atlas and the axis. The atlas is named after a mythical Greek god who supported the weight of the world on his shoulders, because this is the vertebral body that supports the weight of you head. The atlas and axis vertebrae in the cervical spine differ from all other vertebrae because they are designed primarily for rotation.

What the x-ray revealed is - wait for it - Emma is missing the atlas vertebrae!! This important bone appears to have been fused with the bone at the base of the skull, or something - the Dr. didn't know!

While this seems to explain why Emma is unable to support her head when she gets tired, we aren't really sure of the other implications, or if anything can be done about it. The next step is to get a CT scan of the area done, which will be next Wednesday and then we will go back in September to see a colleague of Dr. E. who specializes in this area.

It is possible that this could be linked to her microagnathia (small or recessed jaw) and the asymmetry in her skull - we don't know. Her cranio-facial surgeon Dr. B. responded to my email about it and said "We have seen this not uncommonly in children with facial syndromes."In fact this appointment raises more questions than it answers!! Part of me is wondering if this was the right time to start down this path, however we could have just assumed it was muscular and never done anything. One thing's for sure, we've opened a can of worms, but if it will help Emma it was worth it.

We are not emotional over this news, mainly because we don't know what it means, but we were already aware that much of Emma's condition would be revealed over time. We are praying that this will not have too much impact on Emma's functioning - she is already defying the expectations, and when I called her physical therapist she couldn't believed how well she was doing given this information!!