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.

__________________

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!!

Tough week (already)

On Monday we got a new pulse-ox machine to monitor Emma's oxygen level and heart rate when she sleeps. Right off the bat it was alarming us that she was desating, which was odd because prior to that she rarely had any desats. According to the equipment company, the new machine is more sensitive, so perhaps she's been having desats that weren't picked up.

That night she was really congested and we actually had to suction her (first time in ages). I'm not sure if it's a cold, allergies or maybe teething? She had a pretty restless night though, and wanted to get up at 6.30am. I brought her in with Scott and I but she didn't stay sleepy for long.

I was exhausted and Emma was a little fussy so Mr. TV played babysitter for most of the morning, before I tried to get her to take an early nap with me - no luck!! As it was she stayed true to her normal schedule and didn't nap until noon. Poor thing - both her eyes and nose were dripping all day!! I hoped I might also get a nap today...

Of course that never actually happened! Scott popped in for some lunch and we got into a big conversation. (We have started to screen our conversations so that we don't disagree or discuss worries in front of Emma - it seems to affect her right away.)We don't really fight, thankfully. When there is a difference of opinion we give each other time to air them both before we try to reach a compromise, but my tone of voice can be a bit harsh sometimes!! )

At the moment we are working together, in faith, through some worries. As you may recall, Scott was laid off in May and is still not back in regular union work. Thanks to small jobs here and there so far we've been okay, but with only one income it makes things a little unpredictable. I am also one who does not like any form of uncertainty!! All this would be enough but we are also expecting a new baby in September!!

There are extreme steps we can take if it comes to it (short of selling everything!!) like me finding some work, though my earning power is way less and I have about 6 weeks before I'll be too busy! Rather than panic and make major changes we might regret, we are waiting on God to see where he is leading us. It is important during this time that we maintain excellent communication, both in our worries and needs, but also in our support and encouragement for one another - we learned that when we were in the NICU.

In the meantime Scott has been blessed to be able to put in some good hours on the church renovation - I say blessed because his heart is to use his skills to serve God in the most practical of ways. I'm so proud of how gifted he is, but also that he has incredible integrity and values. Some things are just more valuable than money.

More than once I have looked heavenward and asked why now! I don't have any specific answers but I do get the sense of "why not?"! After all it is only through trials that we learn our strength (in faith) and develop greater patience and perseverance.

We are thankful for the sermon we heard on Sunday, by a guest Pastor. He spoke about fear and the need to stand on god's promises and not allow fear to cripple you. So far I'm doing pretty good - my words are lining up with my actions. When I do get overwhelmed, as I did today, it's important to get it off my chest. That is why faith needs to be renewed daily - the stresses of life can wear it down!

Therefore we do not lose heart. Though outwardly we are wasting away, yet inwardly we are being renewed day by day. For our light and momentary troubles are achieving for us an eternal glory that far outweighs them all. (2 Corinthians 4: 16-17)

For the rest of the week I'll be aiming for more sleep, and praying for peace to enjoy the next few weeks!!

Stay tuned for details of our visit to Orthopedics on Thursday!!

Day at the beach

On Saturday we decided to take advantage of the great weather we get here all summer (sorry, had to rub it in for the guys in the UK!!) and headed to the beach for a day. The drive is about an hour and 30 minutes, not bad for a day trip, even with traffic.

On the way Emma was playing with one of her favorite car toys - my road map!!

At the beach we set up the tent and instantly relaxed. I think beaches are like airplanes, in that you don't have to be in one for long before you lose all sense of time!! A day on the beach can feel like a vacation. The weather was a balmy 8o degrees, with a cool sea breeze, and the water was about 70 degrees. It was so clear I even saw some fish in the shallows!

Emma was not so steady on the dry sand, but she was able to walk on the wet sand. She held on to Kimberly and my hands though at first, the water was intimidating!! That said, when she got hit with a wave in Daddy's arms she just laughed!!




You can't go a whole day without a nap, and Emma slept for about an hour, which gave us time to eat our lunch!

On the way home, about 4pm Emma was visibly tired so I put on the lullaby CD. It worked on Kimberly, me and almost Scott, but Emma was up the entire drive!!

It's so great to live within a daytrip distance of great beaches. In the UK the nice beaches are not far from my grandparents house, but the weather is often a deterrent from making a trip!!

Interesting

Success Is Living Your Values

by Rick Warren

“We should choose to follow what is right. But first of all we must define among ourselves what is good” (Job 34:4 LB).

Everything you do is influenced by your values. Your actions in life are largely determined by the values you hold. Every time you make a decision, you’re relying on your values to tell you what to do.

Unfortunately, some of the values you operate by are counterproductive to your success and a hindrance to your satisfaction in life. You see, many of the unconscious values you live by are ones you didn’t choose; they were imposed on you by parents, peers, and the culture around you. (Today television is the #1 values shaper in our society.) You may be operating on incorrect information and values that don’t stand up under pressure.

Just like the set of the sail determines the direction of a sailboat, your values chart the course for your life. The question is: In what direction are your values leading you? Are they going to deliver what you hope or will you eventually be disappointed?

Here’s another fact about values: they cause a lot of your stress! Stress occurs when what you say you believe and what you actually do don’t line up. For instance:

• When you say, “My family is important to me,” but you’re always too busy or too tired to enjoy them.
• When you say, “I value my health,” but you overwork, overeat, and never exercise.
• When you say, “I’m not materialistic,” but you become so in debt you must worry constantly about finances.

When two of your values conflict, that’s called a dilemma. My experience is that these incongruent values are the #1 cause of emotional tension among believers. What’s the solution?

Identify what is really important in life. “We can choose the sounds we want to listen to; we can choose the taste we want in food, and we should choose to follow what is right. But first of all we must define among ourselves what is good” (Job 34:3–4 LB).

You need to come up with a personal definition of success, not someone else’s definition but your own. Remember this: “Success is the feeling I get when I live out my values.” It’s not a destination. You can be successful at any stage of your life, based on your own personal values and goals. Begin by making a list of what you value most in life. Ask yourself “What is going to last?”

Begin eliminating those things that really aren’t important. “Don’t copy the behavior and customs of this world, but let God transform you into a new person by changing the way you think. Then you will learn to know God’s will for you, which is good and pleasing and perfect” (Romans 12:2 NLT).
_______________________

I posted this devo for you to read because it was enlightening to me and hopefully to you to. You see I get stressed like everyone else, but not at all the times you might expect. For example, when Emma was born I don't think I was really stressed. I said I was believing God for everything, and I was. And there have been many other times when I have not been stressed when it would have been understandable, so I guess my beliefs and actions were lining up then too!

Now, when it comes to money I am inconsistent! At times I say that I am believing God for provision/guidance etc, and I do not worry. And then there are the times when I say it, (and believe it!) but I still worry, obsess, fear etc. I now understand that I may be fooling myself and others by what I say, but it's not real and I'm not fooling God. Perhaps that's why he has to keep repeating the same lessons with me!!

So, what I have learned is that if I say I'm going to trust God, but I'm still worrying, then I'm not really trusting him. Why does that matter? If I'm not really trusting God, then I'm trying to work out a solution for myself (and I'm not that creative!). I may miss the things that God has for me. And above all else in being stressed I lose my joy.

Do not grieve, for the joy of the LORD is your strength. (Nehemiah 8:10b)

Guidance

Legacy to the Next Generation: Correction
by Rick Warren

“Discipline your children while they are young enough to learn. If you don’t, you are helping them destroy themselves” (Proverbs 19:18 TEV)


The gift of your correction: A fourth factor in leaving a great legacy includes offering correction when your children make mistakes. This responsibility of parenting often causes major disagreements in marriage, because no two people see everything alike. In any moment, one spouse will likely be a tougher disciplinarian than the other.

Sometimes it depends on the circumstances, sometimes it depends on which child it is, sometimes it depends which spouse has been offended most. But you must not allow your disagreement to become ambivalence or your children will rule the roost, and that makes them feel insecure.

Kay and I have often disagreed about this. When we do, we’ve learned to step aside privately, work out our disagreement, and decide which one of us is best prepared emotionally to handle the situation. Then we present a united front to the kids.

Whenever we’ve failed to follow this simple rule, it has hurt everyone.

The two most important corrective words you must teach your children early in life are “come” and “no.” Kids who never learn to respect and respond to authority will struggle their entire lives. Nobody gets their way all the time. If you don’t set clear limits for your children now, they’ll never understand the concept later in life, and they will have great difficulty in relationships—in their own families, with co-workers, and even with God.

Solomon wrote, “Discipline your children while they are young enough to learn. If you don’t, you are helping them destroy themselves” (Proverbs 19:18 TEV). Nothing destroys a legacy like a lack of discipline.

Will you have any influence on the next generation? When you die, your legacy should be far more than just what you did on Earth. Your legacy should include what others do after you’re gone.

_________________________

After reading this I felt good about our discipline so far! Emma understands "no" and for about 90% of the time she listens very well, even responding to signs. As far as "come", we're working on that!

This week we've been using time-out on a more consistent level. I give her 3 chances to do what she's told, by counting out loud 1, 2, 3. If she doesn't conform after the 3, she is sat in the corner of the dining room where she can't see much, but I can see if she moves around. She has picked it up really quick and I'm pleased to say I recognize the fake crying!!

It begins...

I have to say that I have been very good about not buying stuff for the new baby. There are probably a few reasons, self-control probably the least of them!!

For one, we have tons of baby stuff that we got for Emma, and it was intentionally gender neutral so we wouldn't have to buy duplicates for a boy! Of the few things we will need, I'm simply going to wait until we need them.

As for clothing, we just don't know how big baby #2 will be, as Emma was small and the odds are stacked against another small baby! Plus you can never be 100% sure of gender, unless you have an amniocentesis like we did with Emma.

The baby's room is not ready yet. We cleaned the area rug, but the walls need to be primed and painted before we get any new furniture. We are intending to use Emma's crib also, once she transitions out of it and if that isn't soon, we have a bassinet for the first couple months.

All that said, today I bought some sleep suits (in the UK we call them baby-grows) and some nightgowns. I guess I must be pretty sure deep down it is a boy as they are boy colors and it didn't occur to me before I threw the packaging away! I was focusing on size - I bought 0-3 months, which is supposed to be 8-12lbs. I don't see him being any smaller than that! That will probably be it until he arrives and we know what size to get.

I also started reading up on breastfeeding. Despite pumping for 16 months the real nursing sounds pretty complicated and I'm nervous about it!! I also know that b/f with an older child around makes it a lot tougher to stick with it, so I'm really going to need support and determination. I have already thought that if b/f is not practical I would try pumping again as it is likely quicker and I can do it on my schedule.

I'm sure the nerves will come and go in the next few weeks, as will the excitement, fears, plans and questions. Fun, fun, fun!!

The eyes have it

The opthamology department that is. What? the title of my least favorite department of all the ones we have experienced!! It starts in the waiting room, which is way too small for all the kids they have waiting at one time. It is also very cramped, so for the few people with strollers it is hard to get a seat with space for the stroller so you end up standing in the hallway.

Of course Emma wants to get out and play with the toys she sees the other kids with. I'm not in a place where I'm comfortable with that! Doctors and hospital waiting rooms are off limits for her until she doesn't lick her hands so frequently!!

Amazingly today we went in on time, however that has never been the case before so the wait, in such a bad waiting room, is another reason! It was also made easier by a visit from Christina and Nathan who had just finished a follow-up appointment after his surgery. (I'll update you on that below!)

The fellow (as in job-title, not decent chap!) who did the preliminary exam seemed nice. He had a woman with him but I don't recall him introducing her! Emma was very good seemingly more curious than bothered by the man shining lights in her eyes and moving her head around. She was also really fidgety which was a pain!

You may recall that this is the department with the highest tally of stupid comments, and it was added to today! The fellow commented that Emma's eyes were mostly straight (as opposed to crossed) and she moved them up and down well, but not left to right. HELLO???? No lateral eye movement/control is a key feature of Moebius, so he was either stating the obvious or actually surprised. My response was to say that she can't move them laterally.

On a non-stupid note he did say that her eyes look great and if you were to do surgery to correct strabismus (crossed-eyes, which is so prevalent in Moebius) her current control would be the best you would hope for and it shouldn't deteriorate. Yay, no eye surgery on the horizon!

Then we saw her eye doctor, who's first comment was "Are we smiling today?" As Christina pointed out to me later, Emma does have a smile that you recognize if you know her, but I don't think he knew that. So I just ignored it altogether. What possible way can you respond?

Anyway, she doesn't have to go back for 9 months unless we see any problems, but she is doing so well with her eyes I feel good.

Also today she had speech therapy and Brooke was very pleased with the new sounds she was using and her eating is progressing well. I think today was the first time I've really thought back on how she used to push all the food out right away and now very little is not swallowed.

At my midwife's appointment, also today, I got a good report on the baby. I had no concerns as the baby is constantly moving. This is quite new to me as Emma was less active. We have 7 weeks left until my due date and we are starting to plan how Emma will be taken care of when I am in labor and staying at the hospital. There's something to be said for scheduling a delivery, but I will not get induced unless there is no other choice!!


Back to Nathan: He had a pacemaker put in last Tuesday and after a slow start he recovered well and came home on Saturday. Since then I think it's been a challenge to keep him from hurting himself as he wants to run around with his 5 year old brother! There are quite a few restrictions that come with the pacemaker as magnets can reset it and electronics also pose a risk. All of these things must be kept 6" from the unit which is in his abdomen. Hopefully he'll get used to it as he gets older.

My Girl

Today we went to see Emma's pulmonologist for her 4 month check. Scott was able to come with us today, which is great because I don't have to relay the conversation and there are two of us to amuse Emma! It actually feels like family time more than just a dr appointment.

We started out in the new standard of screaming crying and turning flaming red when the poor nurse tries to get a weight and height check!! We did manage it and Emma is now 22lbs, and still 30 1/4" tall.

In the consultation room we hastily got her dressed so she would know there was nor more "messing" to be done! Then we put her down so she could walk around int he hallway (we were the last appointment of the day so the place was deserted.) Of course she quickly dropped to all fours (gasp) and then put her hand in her mouth (double gasp!). I grabbed her hands and had Scott sanitize them as quick as possible - hospital floors are just not sanitary!

We walked past the room where her doctor and a student were doing paperwork. Dr. R. was very pleased to see her walking and here her vocalizing - just as well because she turned into a mute limpet the second he walked in the consult room!!

This Dr has had 5/6 patients with Moebius, more than most other people, so we consider him her primary consultant. His main medical concern is Emma's airway (obviously) and in particular the obstruction when she sleeps. I asked him to give a psychic prediction (in those exact words!) on how long he felt she would need the CPAP. In my laymans words this is what he said:

Emma doesn't have the sleep apnea like most people, she really has an obstruction that is helped with the same treatment as "sleep apnea" and they are categorized together. He feels that she'll probably need it until early childhood, when if she is talking and eating well it may help reduce the obstruction to her breathing. At that point he would consider doing a sleep study to see if she has improved airway in sleep - but we don't want to do it too soon as a reduction in difficulty could mean we lose nursing!!

He also mentioned that removing her tonsils and adanoids (sp?) would reduce the obstruction if it was felt necessary at that point.

He also mentioned that we will likely be considering "cosmetic" surgery when she is 5/6, which could include a mandibular distraction (moving her small jaw forward, enlarging her airway) and dental work.

Since Dr. R. helped me to train Emma to sleep better I asked him what he thought would be best for transitioning her into a bed. The concern being around her getting up while she is hooked up to machines!!

He suggested that, well before the baby comes, putting a mattress on her floor and letting her sleep on it for nap etc, but not forcing it. We could either wait until she's asleep to hook her up, or put the CPAP and puls-ox on and hope she learns quickly that she should stay in bed!! I think we are going to give it a try since her sleep pattern has changed a bit since she started walking anyway.

The best part was that as she relaxed throughout the appointment she started to imitate the doctors posture and when he gave her a pen she started writing just like he was. It was hilarious. At one point she wanted to look closer at his ID badge and he commented on it not being a good picture. I said that he was keeping it though as it was taken 20 years ago and he looks younger! (It's okay, we have that kind of rapport with most of Emma's docs!) the student thought it hilarious and Scott pointed out hew probably couldn't say stuff like that!

As we were leaving we wondered if the doctor who delivered Emma might be around, and we saw him right away!! She acted all shy with him, but it was great to show him how well she is doing. We also saw the ultrasound technician who checked on Emma twice a week for the last two months of my pregnancy. They were both excited about our new baby too.

A good visit!

The Wall

It's a phrase I think I've heard mostly in the US - "hitting the wall", referring to the point in sport when the body becomes incredibly fatigued and loses energy. I think it applies well to pregnancy, and with just 7 weeks left to go, I have hit a wall of sorts!! A sleep pattern regularly interrupted by heartburn and thirst, plus bathroom trips contributes to the effects of having a very active person depleting the energy resources I have!!

Yesterday we had a rare Sunday with no plans after church, and with miserable weather we chilled out at home for the afternoon. We skyped my parents and Emma was showing off as usual. Tthis time Scott Picked Emma up like a dumbbell, it was pretty funny...

After a few hours I took a catnap on the sofa and every time Emma tried to wake me up (I kept my eyes firmly closed) I guess Scott was telling her to "sshhh" because when I did wake up she walked over to me, finger to her lips and said "ssssss"!!

Today I really struggled to get up and it was made easier my Emma who is in a cuddly mood today. She snuggled up in bed with me for a half hour before we got up for breakfast.

She kept herself pretty much amused this morning, pulling out books and photo albums. She's also mastering coordination with her little push bike...

We had a visit from her new clinical nursing manager, with the company that supplies her night nurses. When she went to listen to Emma's belly Emma reached for the stethascope, as usual. Kristen was amazed when Emma lifted her shirt and put it on her belly!!

Apparently Emma's confidence has grown greatly with her new walking skills. She will show-off for anyone at anytime, and that usually means they will happily read any book to her - so smart!!

This week we have two specialist appointments and 3 therapy sessions, while I also have a midwife's appointment. With two other specialist appointments this month, we are cramming in all the medical stuff we can before I get to far along.

Money, money, money!!

I received this devotional today:

Your Real Life Is Not About What You Own
by Rick Warren

“Your true life is not made up of the things you own, no matter how rich you may be” (Luke 12:15 TEV).

The Bible has a lot of great advice on money management. Over half of Jesus’ parables deal with handling material possessions. In fact, Jesus spoke more about money than He did about either heaven or hell.

There are two common myths about money:

Myth #1: Money is evil. Actually money is neither good nor bad. It’s neutral. What the Bible actually says is “The love of money is a root of all kinds of evil” (1 Timothy 6:10 NIV).

Here’s the point: we are to use things and love people. When we get that reversed we get ourselves into trouble. If we love things, we will end up using people. God says people are always more important than possessions.

» Read More

I've always had a love-hate relationship with money. I love the feeling of security it gives when you have it, but I hate the feeling of dependence on it that I sometimes feel. Since becoming a Christian, God has been working on this for me. Especially not seeking money for security, but trusting God for our security.

I knew that money itself was not evil - like most things in life it is our attitude towards it that is good or bad. Jesus explains why: "No servant can serve two masters. Either he will hate the one and love the other, or he will be devoted to the one and despise the other. You cannot serve both God and Money." Luke 16:13

How do you know if you are serving money instead of God? Your decisions in order to get or keep your money will contradict God's principles and morals, and distract you from his purpose for your life. It takes some real honesty to admit that you might not be living for the right master.

I feel that one of the keys to serving God, with your money is the tithing principle. If you realize that all provisions come from God, it makes sense that giving back to him in acknowledgement should come first. Tithing can sometimes be tough, especially if there does not appear to be enough left over. However it is in these circumstances that God delights in showing us the amazing ways he will provide. I remember once I even got an energy bill for $0.00!!!

Why am I mentioning all this? When Emma was born and I left my job for good we learned to trust God for our health, and for our finances. Since Scott has been out of work we have had to trust God more and more. It's not always easy, don't get me wrong, but I want to testify about God's grace and provision. We have made decisions that might not always make sense to people in the world, but we believe it is because we are honoring God with our lives that we have been able to even enjoy this time that would otherwise be stress-filled.

We don't know what the future holds, and with a new baby due in 7 weeks I'd really like to!! More importantly I wanted to share the hope and faith that has brought us through.

Get to know us!

I just found this CD with a bunch of photos of Scott on it. I had to share them, they make us laugh!!

What a cute baby!!! (This one cracks me up!)

See, he did have hair, once!

My first real taste of snow, out with Scott and Kimberly

Scott's first attempt at pancakes - they really were an inch thick!! You can see how much I managed to eat!

Visit

Last night Scott and I went to visit Nathan. He had a pacemaker put in on Tuesday and then developed a fever. He also had very cold feet, which they put down to constriction of the veins from the fever. he has also developed fluid on his lungs and was on oxygen until lat eint he day Wednesday.

We called to see if we could visit just before Christina planned to call us so Uncle Scott could come in for some comic relief. It seems the second surgery has a greater amount of pain in recovery and this 3 year old boy is understandably not very happy.

When we got there his heart rate and respitory rate suddenly improved from where it had been, even though he was sleeping! It didn't last long as he woke when the pain broke through the medication. I have decided that the worst sound a mother can hear is "owww, mommy" over and over. Christina is doing great though. It's not easy seeing your child in any pain, but short of anaesthesia, he's bound to feel something.

With some medication he soon fell back to sleep so we took Jeremy and Christina to McDonalds for a 'shake. We haven't had much chance to hang out lately so it was nice to have a laugh, even if it is the worst McDonalds in the world - I'm not even exaggerating!

Not overlooking the toll on the child, I think it is tough for most people to fully appreciate the mental toll on parents that being in the hospital with a child takes. It's really frustrating, especially when there is no definite timescale and a hospital becomes a timeless blackhole. And that's without the stress of a sick child! I hope we were able to alleviate that for a time.

On returning to his room we found Nathan awake and watching a movie. After a few minutes Scott had him smiling and talking. Scott put a medical glove on his head and blew it up! (You'll have to get Christina to put the video on her blog!) You can always count on Scott to get a laugh from a kid!

Somehow it got to 9.15pm before we left, and Emma was at home with Grandma Ellen. We barely walked in the door before Elizabeth, Emma's nurse walked in. She has never seen Emma in full glory, and boy was she having just got a second wind! Emma is quite different when she is up and awake, compared to sleeping in a crib where she looks like a little baby. Elizabeth was quite excited.

Of course I knew it would not be simple getting her to sleep all hyper, but we stuck to our routine (teeth brushed, diaper change, pajamas, eye gel and prayer, in that order!) and she went down quietly. It did take about 20 minutes for her to fall asleep and Elizabeth hung out with us until she was asleep.

Big girl

There is no doubt that Emma is becoming such a big girl. Just look at this picture from Saturday...
For all parents, it is bittersweet when your baby becomes a toddler. I guess that's why we have more kids!!

Here is Emma making us laugh during therapy on Tuesday. I wish I could capture all of the hilarious things Emma does, on purpose that leave us cracking up!!

(Prior to the video she had been sat like a grown-up, with her legs crossed without any one telling her too.)

Some relief

So the neurologist emailed me back and said that she didn't think it was CCD as Emma does not have any abnormality in her collarbone, which would be the primary sign. Phew!

That said, she is intrigued about why the fontanel is still open, although it could remain open and cause her no harm - the soft spot is not all that soft. However, the open fontanel and asymmetry of Emma's head could be indicators of a different craniosyntosis syndrome. She does not have enough information on all the possibilities so she suggested we follow-up with genetics who are able to make a call between unusual differences and actual abnormalities.

Emma first saw genetics as a newborn, but Dr. W. said that it can help to go back after a couple of years as new features may have developed that were not present before, and new discoveries are made all the time.

If they don't see any underlying condition we really don't need to worry about the soft spot. Even if there is a condition that caused it to remain open it may not have serious health implications, so I'm markedly less worried!!

I'm not going to make any moves on it just yet, I'll wait until all the appointments are done this month, and maybe until we see her pediatrician at her 2 year check-up.

Signs

I figured it was time to take down the list of Emma's signs. She knows all the signs she saw and still uses many of them regularly. I did want to list them on the blog so we can look back at them!! So, here are the signs Emma knows (I think there is 96!) ...

More
Stop
Go
Wait
Again
All done
Please
Thank you
Sorry
I love you
Yes
No
Goodbye
Time
New
Day
Night
Play
Share
Game

Feel
Happy
Laugh
Sad
Cry
Nice
Hurt
Different

Hot
Cold
Dirty
Clean
Up
Down

Eat/Food
Drink
Sleep
Wash hands
Brush teeth
Bath
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New theory

It is often agreed that the internet is both a blessing and a curse, and I don't dispute that. Today, for some unknown reason, I decided to check into something regarding Emma and I don't know if it was a good or bad idea.

All babies are born with two soft spots, or fontanelles. One at the back of the skull, closes pretty fast and a larger fontanel at the front. Anyone who's been around newborns is familiar with the "soft spot" and you may have noticed that you can see their pulse right there.

Well, most fontanelles close up by 12 months of age. Emma's is still there and does not seem to be getting smaller. I have been putting it down to the fact that her head is misshapen, but that has not really changed and I am concerned about the implications of it not closing.

While I looked into the issue I came across a condition call Cleidocranial Dysplasia (CCD). The website is http://www.faces-cranio.org/Disord/CCD.htm There are characteristics listed that Emma shares, though not all, and some of which are not explained by her other diagnoses. Another site even said this: "Some young children with this condition are mildly delayed in the development of motor skills such as crawling and walking, but intelligence is unaffected." This is really otherwise unexplained in Emma.

Rather than stew about it I emailed her neurologist, who we are due to see in a month or so. She was not really familiar with it, which is why I emailed in advance, so she can check it out for our appointment! She did say that orthopedics will be a key in such a diagnosis and we are already due to see them in August. What looks like torticolis could potentially be something else and it is still very pronounced in her neck when she is tired.

So, I could be making something out of nothing! On the other hand I don't want to miss any treatment emma might need for conditions that may have been eclipsed by the Moebius Syndrome because we assume any abnormality is a part of it.

The good news is that if we did confirm an additional condition, Emma has one of the best cranio-facial surgeons on her team and most certainly we will give her anything else she needs.

On the flip-side, I pray that her fontanel is nothing more than a 'red herring' in pursuit of treatment for Emma's conditions. Sometimes I think I know more medcial stuff than is good for me!

While we're talking about health concerns, Emma developed a red bug bite rash on her arm this weekend, but as it faded today I noticed a red ring around the main redness. (In the US a bullseye rash can signal Lyme Disease froma tick bite.) I have not had to remove any ticks, but I don't think that concludes she could not have been bitten. Anyway, the nurse at her doctors office said they won't diagnose it as Lyme's unless it grows, so I measured it and will keep an eye on it.