Life Happened

It's true isn't it. Sometimes, despite the best laid plans, life happens and you get side-tracked! I actually started to write a posting a few days ago and saved it until I could upload photos. I just did that and now have several days of pictures to show you!! That said I figure you can catch up with us better in pictures!!

Emma is fascinated with the laptop, which is not surprising when we park her in front of it so often to see our family!! She has cut off a couple of web chats with her random banging on the keys!!

Emma demonstrates her new love of standing! She can only stand when her knees are locked, but her muscle tone should improve as she gets more active.



The sunglasses Emma has are still a little big, so now I put her sun hat on when we go out. She doesn't mind it and looks adorable!!

After 18 months in our house Scott and I finally managed to get out into the garden on Saturday for some hard graft (Brit word for labor!!). We had several bushes/trees that we dislike and were able to borrow a truck and a chain to help us remove them. Digging was still necessary, but we couldn't have done it alone!! Check it out...

That's a dirt line, not tan line!!

Today, for church, Emma wore her jeans for the first time (since they fit!) and is showing signs of an independent spirit!!

Miracle Day

Today is the day you need to buy ice-cream!!

All proceeds from Dairy Queen Blizzards bought today will go to support the Children's Miracle Network which support hospitals like Emma's and gives hope to children.

Treat yourself and help the kids!

http://www.miracletreatday.com/

Banana Cream Pie is my favorite! Scott gets Peanut Butter cup with chocolate sprinkles mixed in!

Surgery #4

Today we met with Emma's plastic surgeon (who did the tongue-lip adhesion). We scheduled the surgery to detach her tongue for September 29. Following the surgery she will be in the hospital for a couple of days, to recover, but also to observe what happens to her sleep apnea.

I asked him about Emma's recessed chin and he seems to think it may be that, not a small chin, in which case it could move forward as she grows. We can always elect to move it forward if it does not. Of course, if her tongue continues to obstruct her airway when it's released moving her jaw may be deemed medically necessary.

Following that appointment we met with a speech pathologist to discuss feeding Emma orally. She had a listen to her swallow and then decided to try her with substance! She had her first taste of food today - apple sauce! The spoon was just dipped in the sauce so there wasn't too much for her to deal with...

You can see the speech pathologist using a stethoscope to listen to her breathing and swallowing while I feed Emma. The SP said that her breath sounds stayed good throughout, which suggests that the apple sauce went down the food tube, not the air tube as we feared!! After consulting with the pulmonologist she will let us know if we should start doing 5 dips once a day.

And now, well, we're going swimming!

Precious moments

Although Emma was up late (10pm - it was Friday!!) she slept soundly with NO desats!! I'm so pleased and apart from wanting to get up at 3am she gave us all a restful night. I think tonight we'll try and get along with her in her own room.

I've been trying to help Emma strengthen her legs and yesterday she showed me just how good she is doing...

Tough night

Between 10pm and 11pm (the times Emma and I went to bed) she had 3 desats. The number dis not decline through the night! I was not keeping track, but I feel confident in saying she had at least 15 desats last night. What does that mean?

Firstly, the pulse-ox monitor which is on my nightstand (while she is in our room) sounds a loud alarm and the oxygen level (if under 90%) flashes red. It continues until it goes back above 90%, or you silence it. After a few of these I don't think I went too deep into sleep, concerned.

I noticed early on that her heart rate was lower than normal, under 100 beats per second, but did not go below 83bps (80 would have sounded the alarm).

Secondly, when the alarm sounds I need to make a call if she requires suctioning. The machine is small, but very loud and one of the only sounds that wakes her up! She ignores the pulse-ox! Ont he occasions I did there wasn't much there, but eventually I decided to go down her throat with it, and she was good for at least an hour and half.

If she looks pink and is not struggling to breathe the chances are she is fine, as was the case last night. If she was the opposite, or did not return the oxygen level to 90+ then we would need to call 911. That has so far never happened.

So, resisting the urge to cal the hospital or pediatrician at 2am I waited until this morning to call the pediatrician. They got me in right away (which meant I had to change put of my PJs immediately!) He checked her lungs for signs of pneumonia or anything else and declared her fine. He agreed that she likely had just a cold, and probably was in a really deep sleep so her heart slowed and her oxygen dropped subsequently. (He has reminded me on many occasions that most babies don't have a pulse ox and you'd never know if they were doing that!!)

Emma is fine in herself, chatting and playing, though I think she was unhappy that her morning nap had to be skipped!! It's always nice though when she snuggles in and falls asleep while I'm holding her. If I had nothing else to do (like eat, pump etc) I could sit with her all day!

I can tell you that she was 15lb 14oz this morning!! My tiny baby is getting so big!

New Directions

When we realized I would need to give up work to take care of Emma we had no choice but to trust God that he would provide for us financially, emotionally etc. So far we have been no less than amazed at what that has meant. Fred's Footsteps gave us over $5,000 for various expenses we had, bills inexplicably came in with a zero balance or smaller than usual amounts, and of course, Scott has had a constant supply of extra work (and the God-given energy to do it!)

We have often discussed what purposes this new arrangement might have for God's Kingdom, i.e. how will our life be used to let others know about the eternal hope that can be found in Him. Over time we have begun to see them emerge - and I am sure it's just the beginning.

No-one can question how wonderful this blog has been for sharing our journey, after all you're still reading it!! I appreciate every opportunity I get to share about the role God has played in this journey, whether you think I'm making it up or not! I have heard feedback that Emma's ups and downs have been a source of encouragement to people and that is priceless.

Moving on from there though, there has to be more. For instance, this week I was contacted by Fred's Footsteps and asked if we would share our story for a fundraising video they are making. We have agreed and you better believe I will somehow use it to share the good news!

Today I went to the second meeting of a committee at the hospital. I was asked by Taryn (super-nurse) to be one of two parents, alongside nurses and doctors, working to increase the success of breast-feeding initiatives and efforts in the NICU. It was a lot of fun and I am enjoying working to help other mums.

While I was there, Taryn was also floating the notion of becoming a parent advocate in the NICU, which would involve speaking to parents who have a child receiving treatment there. I don't have any details so I don't even know if it's an option right now, but what a great opportunity to encourage others and show them God's love (through actions if words are not appropriate!)

These are all things I could not conceive of doing if we had not been through this, and certainly not if we were not so open to sharing this hope with others. I am sure I would be just fine if all had gone as planned, and maybe one day I'll get back on that path, but for now I am excited to have the opportunity to do somethings with a purpose greater than my own.

I guess what I'm trying to say is that the worst experiences can be used for so much good if you are open to following God's purposes. Ask Him to reveal the potential in the worst storms of life.

Positive Signs

Emma is on the road to recovery. She slept much better last night and woke up full of life this morning, it was 6.30 so I was not so perky, but pleased for her none the less!

I'm also pleased to report that she has not thrown up since Sunday, well maybe once a little bit, but that's still a great improvement!

Emma is changing every day and we see so much progress in her. She loves to clap her hands and rub her feet together at the same time. She then pauses, looking at you, waiting for the praise!! Often she'll do an encore with some waving!

We have been teaching her to reach her arms up when she wants to be picked up and she has reached out for me a couple of times. We are also positioning her on her knees in the hope she'll start crawling! So far she will push herself backwards on her belly, or round in a full circle to get something. Once or twice she's found her way to the edge of the blanket and is playing with the area rug. Does anyone know a good way to clean an area rug?!

It is great to see her sitting up now. Her back is much straighter and she uses her hands more. She will even sit in her stroller and high chair without falling to the side.

Vocally she has started making some new noises that really sound like expressions. I have tried (and failed) to catch them on video, but she goes all quiet when the camera comes out!!

You can put Emma on the floor, surrounded by toys and if the TV is on you bet her eyes will be glued to it! She also waves at it! I confess I do sometimes use it to calm her down or entertain her while I do something else. I am sure that makes me a bad parent, but sometimes you need all the help you can get!

Unfortunately I do not like silence, and not wanting to talk to myself, the TV is often just background noise. When I lived alone it was always on. A therapist would probably have a field day with that!

I have to say this week has been much better than expected, with less sleep. I've really been focussing on the big picture and not little things. When Emma gets cranky I just try my best to comfort her and forget everything else!

Intensive Care

Emma is a bit high maintenance right now! She requires suctioning often during the night and has regular desats. I have been in touch with the doctors but they don't really have any suggestions! Despite the increased care she needs I have been blessed with extra patience this week (to counteract the increased fatigue!).

When Emma's speech therapist came yesterday she was very fussy and clingy which at first I put down to just eating. However it soon became clear that she just wasn't herself, she normally warms up to people pretty quick. We deduced that she probably caught the cold-thing I had last week.

So last night we let her sleep in the travel crib in our room. I got a much better night's sleep as I didn't have to get out of bed to suction her or silence the machine. It's not ideal, I think she wakes Scott up when she cries now, but a sick baby needs her mother and she definitely slept better.

Hopefully this means the intensive suctioning and care is only temporary and not due to her medication. The doctors did suggest taking her to the pediatrician but I haven't decided about that yet. It's a very fine line, I don't want to bug the specialists, but the pediatrician won't make any specific diagnoses. In the end none of them really know for sure what's going on!

A better place to be

This devotional was sent to me today and I think it is relevant for so many of us, even just a little bit!

Seek the peace and prosperity of the city to which I have carried you into exile. Pray to the Lord for it, because if it prospers, you too will prosper. Jeremiah 29:7 (NIV)

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Today’s guest devotional is provided by Jon Walker –

Have you ever been somewhere you didn’t want to be? Maybe it was a job, a town, or a marriage. Maybe it was a stage in life, like singlehood, or a state in life, like a disability. It’s very possible that as you read this, you’re wishing you were somewhere else – anywhere else – living a different life, but you know it’s not likely that anything is going to change any time soon.

God has a word for you. It’s the same word he gave a group of people when they were stuck in another country, exiled from their homeland. They’d folded their arms and said, “We’re going to wait this thing out, and when we get home, we’ll start living our lives.”

Through the prophet Jeremiah, God told them, “You’re not going home any time soon, so start making your lives here. Plant gardens, buy homes, let your children get married, and pray for the peace and prosperity of the place where you’re currently living because, by doing that, you too will be blessed with peace and prosperity” (Jeremiah 29:5-7).

Don’t invest your energy in hopes of leaving; instead invest your energy in the people around you. Don’t be physically present but mentally somewhere else, thinking of the future or the past, thinking of someplace else. Our journey with Jesus requires we be fully present in the present.

You may feel like you’re in exile too, but God is still working in your life; and his message to you is: Dig in and fully embrace the life around you.

I was able to take a good nap yesterday afternoon, while Scott watched Emma. It turned out to be a very good thing because I was up every hour or two through the night! Emma was particularly drooly and she kept waking crying. I suctioned her each time, but there wasn't much else I could do. I'm really hoping she's not sick or this will continue for long as she doesn't get any decent sleep.

We fear she may be constipated as we haven't seen any movements since Saturday! (plenty of gas though!!) Couple that with 3 vomits yesterday (one in service!!) there seems to be something still going on in there.

We missed part of the sermon yesterday due to taking her out for suctioning, but caught the last part and I'm glad I did. I've been feeling very discouraged lately, almost hopeless. It's just been overwhelming trying to be a good mum, wife and feel good about myself, all while getting insufficient sleep. I want to go and see friends, or take walks, but it's easier not to have to deal with all the stuff that we have to take.

I also feel very isolated in my experience as a mum. When people ask how Emma is doing I usually just answer that she's doing good. Of course, on the whole she is doing much better than 8 months ago!! However saying that she's throwing up doesn't seem like a big deal to most people. For us, it's a chance for her to choke and or aspirate. That makes driving with her by myself somewhat scary.

So, as I was saying the sermon yesterday was perfect. I realised that I can't do it all by myself, in my own strength. It is only when I put my hope in Jesus and lean on him that I can keep going.

That may sound too "spritiual" but really it's very simple. I'm tired and I get despondent about Emma's future, maybe place too much importance on cleaning house etc. When I focus on Jesus, that there is a purpose for my life, for Emma's and it doesn't require me to be perfect (yes, impossible anyway!) I have greater joy in these things. When I'm physically exhausted I need to ask God for strength to go on - just like he gave me when Emma was in hospital etc. The promise is there...

2 Corinthians 12:9 But he said to me, "My grace is sufficient for you, for my power is made perfect in weakness." Therefore I will boast all the more gladly about my weaknesses, so that Christ's power may rest on me.

(That's what I'm doing here - pointing out tha I am indeed very weak, and it's all God that gets me through.)

So I will keep my eyes on Jesus and realize that no-one else needs to understand what we are going through. I will keep writing about it though, it helps me to vent, and no-one actually has to listen!!

Anyway, here are some pictures/videos for your pleasure!!

Emma, showing her clapping and waving prowess!

Sleeping comfortably?

Saturday's picnic...

Emma's own pool chair!

Doing laundry at 6am on a Sunday morning is one of those things you don't imagine when you think of being a parent! Why? Well Emma threw up in her bed this morning, on the last clean sheet, and then threw up on her activity mat, which is where she lives most of the time! If I want to put her down to play or sleep this afternoon I have to wash them now!

I feel guilty for the incredible frustration I'm feeling. Scott volunteered to be on baby duty last night so I was ear-plugged and sleeping until about 5am when Emma's screaming, which wasn't waking Scott up finally got on my last nerve! I changed her diaper and clothes and went back to bed. She clearly wasn't happy with that and I gave in at 6am and brought her downstairs.

Thankfully she waited until I'd finished pumping before she threw up all over herself!

I can't blame Scott, he's as exhausted as I am (maybe more!) and fortunate that he can sleep through the loudest noises (though thankfully not me calling him to get the suction machine.)

Emma has been on her medication for reflux for a week now. She has been off the lipids for a week and a half. She has thrown up on three of the days, twice on two of them. One thing the docs thought was contributing to the vomiting was that her stomach was emptying too slow. I think it still is, she has food in her belly long after it should be gone. I guess I'll be in touch with the hospital this week!!

Before all this though, yesterday afternoon we visited the Thompsons and Emma went in the pool again. It is very relaxing and she fell asleep soon after.

I'll have some pictures for you soon, I haven't had time to download them!!

24 hour gamut of emotions

That's right! After a desat at midnight Emma slept until 6am. So did I, except for Scott's alarm rudely awakening me at 5.30am!

Yesterday was tough. Emma was fussy half the time (just the opposite for the rest) but I felt horrible all day. We did make it out of the house which is always helpful.

In the evening Emma had Grandma over to play while Scott and I visited new baby Aaron who arrived yesterday morning at 8lbs 12oz. Holding this comparative feather I realized how heavy Emma now is, but can not imagine her being 3lbs lighter than Aaron!

Any other day I might have become broody, but I just felt relief I only have one baby to take care of!! In fact when I went to change his diaper I was too nervous - he is so little and we never had that much responsibility for Emma so young. If we do have a healthy baby it will be as unique a day as the first birth!!

As I watched Aaron making all kinds of faces in his sleep, as always, I thought of Emma. It does set off many emotions thinking about her challenges, but also I am coming to realize that I am used to Emma's expressions, or lack there of. She is certainly very expressive though!

On a different note I have just learned that my paternal Grandma passed away overnight. She was very sick the past few years with osteoporosis and I am praying that she is now at rest. Time is so fleeting, it makes each day so much more crucial.

Bad day

9am may be early to make a call for the whole day, but I feel pretty confident that today is a bad day. Here's why...

• I have had a sore throat this week, with nasal drip that has been disturbing my sleep.
• Emma has been waking me up at 3 and 6am the past two days.
• Last night there was an incredible storm that kept me awake, so the past two nights I've been up until about 1am.
• Emma continues to have lots of gas, threw up once yesterday and twice so far today.
• Emma is over-tired after her restless short nights of sleep, and the new nap regiment, so she is pretty much grizzly all the time.
• Somewhere in all of this I have to pump, laundry to do and a house to clean.

Thankfully, in about 13 hours I can go to bed and try to get a decent night of sleep. Hope, it's a beautiful thing.

Panic

So after dinner (ours, not Emma's) I was taking Emma out of her high-chair and her g-tube extension (the tube that hangs) caught on the chair and pulled the whole thing out. I'm talking about the whole thing, even the little balloon filled with water that sits inside her tummy.

I screamed hysterically to Scott who was on the phone to get me a syringe (to deflate the balloon to shove it back in!). He had no idea what was going on, but grabbed a syringe for me. I quickly pulled the water out, popped the little tube back through the hole in Emma's belly and put the water back in.

I wouldn't be me if I didn't then call the hospital (at 9pm) to make sure everything was okay. The doctor I spoke to seemed not too worried, or even interested!!

Emma was bemused by the whole thing and probably wondered why I wouldn't feed her until I got called back by the paged doc!

You may be wondering how the new sleep system is going! Nap time has been okay. She stills wake up after 45 minutes but instead of bringing her into my room I wait a couple minutes before comforting her and leaving her to sleep in the crib.

At night she sleeps through, but bedtime is tough if she's awake, mainly because playing with Daddy gets her hyped before bed!! Plus we've been out late lately, so she's staying awake later. Scott should be done with the late overtime soon though, so dinner and bedtime won't compete!!

Here are some cute pictures from a recent trip to Olive Garden...

Weekend Update

Last week I donned a white lab coat and became a crew leader for Vacation Bible School "Power Lab." Teaching 25 8-12 year olds for 2 hours each morning turned out to be a lot of fun. The most significant part was realizing that six or more years ago the lessons may as well have been in a foreign language because I had not yet fully realized the power of Jesus.

Teaching VBS was not in my life plan, but I am thankful that it was in God's plan for my life. Nowhere else can you have such an impact on the future than in the lives of children. (But one week is my limit - I have no desire to become a teacher, and the utmost respect for those who do!)

Over the course of the week Emma's top front left tooth poked out and is making it's way out! Pictures when it gets all the way out!

On Saturday Emma and I went to Christina's baby shower. As we all sat chatting afterward Emma gave her first wave! Now she has been waving at herself for a while, but this was a clearly intentional wave to someone else. I am so pleased that we got it on video...

Play time with Pastor Bob at the party!

On Sunday we found some relief from the heatwave at the Thompson's where Emma enjoyed the pool!

Cat nap during supper!

When we came home I left Scott to put Emma to bed while I pumped. I went up to bed at 10.30 expecting one or both of them to be asleep, but no, they were watching the ESPYs in our bed! Scott's excuse - she was just too cute to put to bed!! He was right, she was being adorable. I soon got her asleep and put her to bed though!!

This week I want to work on sleeping habits with Emma! She has been sleeping right through, which has been awesome, but we usually put her to bed already asleep. For naps it's the same or I lay holding her until she nods off. As we have nothing scheduled this week I figure I can afford to lose a little sleep letting her cry it out for a while, before it goes any longer.

I'll let you know how it goes!

All change

Emma and I headed downtown today for some doctors visits. We had one with GI and one with Opthamology.

I was relieved that the GI docs had decided to take action regarding the vomiting and desats Emma has been having. They believe that she may be experiencing some reflux or micro-aspiration of the vomit that is causing her airway to protect itself - by closing! This short halt to her breathing is what causes her oxygen saturation to drop.

The solution has several facets. First we are cutting out the microlipids and going for just milk. The lipids may be slowing down the stomach emptying, which is leaving it full and contributing to vomiting. Second she will be on meds to reduce the acidity of anything she brings up, reducing potential damage to her lungs, and to speed up the stomach emptying, reducing the contents she could bring up.

We will continue to release the air from her belly and feed her with a pump overnight.

These measures should eliminate the vomiting (woohoo) and she will get another esophogram in August, this time orally, so we will see where it goes when she swallows.

Did I mention she is now 15lbs, 3 oz!!! Porker!

We then waited 45 minutes to see the opthamologist! The resident who first examined Emma actually said "she doesn't blink much." Barely able to hide my indignation I responded " she can't blink at all." Yes, she did know she had Moebius. A second resident said "she doesn't turn her left eye outward." I responded, as you would, "she can't turn either of them out!"

Now seriously, if you're training to be a childrens doctor you need to think before you speak!

Thankfully Emma's vision seems to be on a par with other children her age, Moebius or not.

Appointments over we met Taryn at the NICU for a lunch date. Taryn was Emma's nurse a couple times, but mostly she became a friend and great encouragement to me. Here's Taryn with Emma before we left...



Taryn has asked me to join a committee to work on encouraging more breast-feeding in the NICU, either the real thing or pumping. I am more than happy to do it and am also volunteering to help with other related efforts. Our unique experience seems to be greatly suited to encourage others and I'm all for it. I'm hoping to write an article with my lactation specialist for the same reason.

Bodybrushing 101

A nurse in the NICU once mentioned this to me, and then we saw this news story in the UK...

http://news.bbc.co.uk/2/hi/uk_news/england/somerset/7302669.stm

Then, at the conference a mother who has been flying to the UK every two months (after mortgaging her home), so her daughter can get this therapy, gave a talk. She explained that the man who developed the therapy that had great success with a number of Moebius patients died a few years ago and they only other person in the world who knows how to do it is his ex-wife. She apparently hates to travel and only practises in England, Ireland and Paris.

Here's the website with more info: http://www.bodybrushing.com/

It's about more than getting Emma a smile (there's always surgery for that), the benefits cover the body as a whole and the kids confirmed that they had improved coordination, balance and other benefits.

The therapist has agreed to come to the US, Orlando Florida, every two months if there are at least 12 patients. The mom at the conference was arranging this so that more people here can have access and Orlando is a location accessible by direct flights from most cities.

The price? $500 for the initial assessment and session. $375 every session thereafter, every two months. Plus airfare to Orlando. The sessions are about an hour so a daytrip is all that is required!

If you're thinking what we are the yes, it's expensive. More than buying the new car we need or taking a luxury vacation (we need, but aren't taking!!). But how do we not do something which could dramatically improve Emma's quality of life.

We have committed to the first visit in August and will see from there. Please join us in praying that this is something in God's plan for Emma, and if so, the financing will become available somehow. God knows Scott can't work more than he is, and I have a new understanding of how important it is for me to really help Emma develop.

Conference pictures

Emma chills in our room


I try and keep you updated


Emma with Clare, Lauren and Lilly

Emma takes a nap at dinner!!

Say no more!!


Obligatory family pic!

Day Three MSF 2008

Our day began with an appointment to see the team researching strabismus (cross-eyes) in Boston. You may recall we sent in samples for genetic testing about 6 months ago and wanted to see what's happening.

As further data they tested all three of our eyes and were able to tell us that Emma is able to focus on objects near her face, drawing her eyes toward the center, but they don't move outward. As always we tried to connect with the researchers and it turned out to be a good laugh. (I was also told I look like Katie Holmes, but that's just one of my personal highlights!!)

We missed the Q&A session, but it was worth it as we had some good conversation with a Christian couple who were there too.

We made it to a vision seminar, low-vision to be precise - meaning vision problems can not be corrected with glasses/lenses or surgery. For example, some Moebius patients have reduced optic nerve signals. These are things we'll have to wait on with Emma, but we did learn more about caring for her eyes in the absence of blinking or fully closing in sleep. One mom told us her daughter has a gold weight in her eyelid to bring it down!!

At lunch we had some interesting chats! One couple had a 6-month old daughter, still in the NICU with very similar experience to Emma (for Moebius and reflux) but she had been given a tracheostomy. They had never been told about the tongue-lip adhesion Emma got.

Another lady's great-granddaughter, now 3 also had gastroschisis! Dr. Engle, one of the research doctors was at the table and jumped on that "coincidence" right away! Something that may otherwise have been missed in the normal research process.

Our weekend seemed to be full of divine appointments like that.

Next was the group picture. I was told I could hold Emma, but that didn't seem right, so I asked Lisa, a new mom with Moebius herself, to hold Emma for me. She was thrilled. In fact we got lots of requests to hold her or take her picture! Many of the girls were enamoured with her! Remembering wanting to hold babies when I was there age I tried to oblige! Besides, these will be girls Emma looks up to in a few years.

A slide show of pictures rounded off the day and we headed home. On the drive our brains started the process of, well processing all we saw and heard. I'll be honest and admit that part of me is still in denial that we have to face all theses things, but the rest of me feels like we will make it through, by the grace of God.

Exhausted and hungry we ended the weekend with dinner at Olive Garden and I kept expecting to see Moebius faces in the crowd. Somehow it felt odd not too.

For all that we have learned and felt this weekend we need to thank Jerry once more for making it possible. We can continue to have hope for the future, with our eyes a little more open.

Day Two MSF Conference 2008

We started our day with a second visit with one of the research teams. At this session Emma was assessed by a neurologist who believes she has some residual nerve function, which could strengthen with age. It's nothing dramatic by worldly standards, but for her any expression is huge!

After that I went to a support session for Moms. I learned of some other common aspects of Moebius Syndrome like big dental problems, night terrors and sleep-walking. Things like self-image and sibling issues were no surprise and to some degree universal anyway!

Scott started a different session with Emma but ended up taking her for a walk! She was very well-behaved, but often got a bit restless.

We re-grouped and after connecting with some other people and chatting awhile we caught the end of an opthamology seminar, but didn't understand it as we'd missed the intro!

After lunch we ended up taking a siesta as Emma really needed to get some sleep. I stayed with her in the room while Scott went to a Dad session - apparently what was said there, stays there!!

We then attended a session about body-brushing, and I want to go into some detail about that so I'll make that a seperate posting this week!!

Then it was dinner and the talent show!! I just had to film this - I did not cry!!

Day One, Moebius Conference 2008

It was a hectic morning, always is when we go somewhere away from home! For two days we have two suitcases, a couple bags for equipment, the diaper bag (my purse!) and two strollers (I like options!)

It took about 2.5 hours to get to the hotel in Parsippany. We took smaller roads as the directions suggested and it was a really pleasant drive, more to look at than on the highway. Emma slept for the first hour and a half and was pretty content for the rest.

The hotel has a castle-esque quality to it and is massive. We registered at the conference right away and a man with Moebius came up to greet us. He was very friendly and welcoming which put us at ease, but I was quite self-conscious as his face was very distorted and he had a cloth on his shirt to catch his drool. There is a few people with drool issues and to be honest we don't know if Emma will too - her bottom lip is attached to her tongue, and that may be holding it up.

There are many kids running around with "Moebius" looks in varying degrees from un-emotional to very distorted. They are all fascinated by Emma - the cute baby! Was there ever any doubt that she would be a hit here too - uh, no! Of course, with that comes the touching! Kids wanting to touch her, feeling affinity with her as she looks like them (a bit), or they have siblings with Moebius.

You'll be pleased to hear I have been keeping my germ-phobia under my bitten tongue!! We had a meeting with some researchers evaluating Emma for autism signs. They were great and even showed me how to get Emma to converse with me! Of course they brought toys for her and when she put one of the cloths in her mouth I joked about my OCD going nuts! They understood and assured me everything had been cleaned!

We also met with the Canadian surgeon who is the authority in smile surgery - at the same time as 10 other families! The surgery takes a part of thigh muscle and moves it to the face, attaching one end to the corner of the mouth, the other to the ear. Patients then learn how to make the corners of their mouth move. The surgery takes 9 hours per cheek, and they have to be done 3 months apart! In Toronto. And even then they could end up with a lopsided smile!

I think we are going to wait until she is much older to decide about that - she would need to be at least 4 anyways.

We have met some families and I got to ask questions about their little girls. Some have issues like club feet, other nothing much. One thing's for sure, they all have personality! We even sat with one couple for dinner, they met at the conference and both have Moebius. They have a 5 month old baby who doesn't have it!

There are Moebius people here from 12 countries and all ethnic groups.

Seeing all the kids running around, heading for the pool in swimsuits (through the middle of the hotel!) brings back happy memories of meetings we went to with my Dad's company. All the families would go for a weekend and the kids would have their own rooms and get to hang out. We know Emma will make friends and get to run the halls at future conferences and we can't wait!

Surprisingly we have felt really positive all day. I expected to feel sad and sorry for Emma, which I do, but there was so much energy and love in the "Moebius family" it's wonderful to know that if she is faced with this challenge, that she has so many others who can support her in ways we can never.

Refresher

With the Moebius Syndrome Conference looming I thought it would be good to remind you exactly what Moebius Syndrome is!!

Moebius syndrome is a rare neurological disorder that is present at birth. It primarily affects the 6th and 7th cranial nerves, leaving those with the condition unable to move their faces (they can’t smile, frown, suck, grimace or blink their eyes) and unable to move their eyes laterally.

Other cranial nerves may be affected, especially the 3rd, 4th, 5th, 9th, 10th and 12th. There may be skeletal involvement causing hand/feet anomalies and/or club feet. Respiratory problems, speech and swallowing disorders, visual impairments, sensory integration dysfunction, sleep disorders, and weak upper body strength may also be present. Approximately 30% of children with Moebius syndrome are on the autism spectrum.

Symptoms May Include:

• Lack of facial expression; inability to smile
• Feeding, swallowing and choking problems
• Keeping head back to swallow
• Eye sensitivity due to inability to squint
• Motor delays due to upper body weakness
• Absence of lateral eye movement
• Absence of blinking
• Strabismus (crossed eyes)
• Drooling
• High palate
• Short or deformed tongue
• Limited movement of tongue
• Submucous cleft palate
• Dental problems
• Hearing impairment
• Articulation / speech disorders
• Minor mid-line anomalies
• Club feet
• Hand/feet deformities

(Those in bold Emma has shown.)

Although they may crawl and walk later, most children with Moebius Syndrome eventually catch up. Speech problems often respond to therapy, but may persist due to impaired mobility of the tongue and/or mouth. As children get older, the lack of facial expression and an inability to smile may become the dominant visible symptoms.

http://www.moebiussyndrome.com/

a new day

Thanks. I needed that!! I'm not going to do anything as it turns out. Styling it differently hides the longer hair!! Yes, I'm avoiding the confrontation, I just don't have the energy!

You know how some people are commitment-phobic? I'm kind of the opposite. always good at multi-tasking I seem to agree to most things people ask me to commit too. Unfortunately there is an unpredictable variable now - Emma!

Whenever I am pushed for time, or trying to meet a couple of deadlines at once Emma decides she can't live without my constant attention! Clearly she doesn't really know what's going on, but may be she does sense that I am distracted and gets my attention back.

What I finally realized today is that I need to put her first, after all it is for her needs that I am at home! I enjoyed some time with her this morning, just talking and bonding. She is saying "mama" and what could be "Emma!" When I tried to video her talking she clammed up and tried to grab the camera!!

This afternoon Scott was home at the normal time and they were hanging out.

Look behind you

Indulge me here - I need to rant!

I went and got my haircut today, same guy as last time. It looked great and I left happy. At least until I caught sight of the back - in a store, he didn't show me in the salon.

Now I'm stuck with a dilemma. I have a really busy week, and the salon is in the city. Do I arrange a babysitter and go back for a fix, or do I bite the bullet and go to someone nearby to fix it?

Have your say and let me know what I should do. Girls, you know how distracting it will be until it's put right!

On a different note, Emma's therapist suggested giving her a bowl and spoon to play with at the table while we eat. Here's what happened...

More pictures

Emma tries out the exersaucer for the first time! Her feet just touch the bottom and she seems to like it. Keeps her busy while I get some chores done!

Pretty in pink!

Snoozing in her high-chair!!

Pretty in pink (again)

Snoozing on the playmat - I'm sensing a theme!!

Excitement is building!

The Moebius Conference is fast approaching and the anticipation is building! Billed as having over 100 attendees with Moebius of all ages, 300 people total we are expecting to meet many others who have or are family members of those with Moebius. It will no doubt be an emotional time.

I have just received word that we are scheduled for a complimentary session with the doctor in Toronto that does the "smile surgery"! How exciting! There is also a doctor evaluating kids for autism. I have contacted her, but I'm not sure Emma's old enough. Even so, she is showing no signs of it that I am aware of and is seeing her neurologist again in January!

Further more, this will be our first family trip by ourselves and it will be great to spend some time together.

We haven't quite figured out how Emma will be with all the sessions, hopefully she'll behave! At least there is two of us so we can take shifts! They have childcare, but I'm not even close to that stage!

We have many years of uncharted territory before us, and we are determined to do everything in our power to give Emma the support and assistance she needs. We know you feel the same! Thanks for praying with us for a future that sees Emma living her life with purpose.

Pictures

Emma and mum at the shore

Last Sunday at church, Emma was snoozing, and I was left sitting with her where we'd been praying when everyone else went back to their seats!

Emma and Nate hanging out. Nate is two months younger than Emma...

...but when she gets bigger he'd better watch out!

Weekend update

On July 4th we spent the morning sleeping in (in shifts!!) and then went to a bbq at a friends house. It was great to have such a relaxing day.

On Saturday Scott worked in the morning and we went bowling in the afternoon...

Esther was kind enough to watch Emma (sleep) for us!

She also spent some time chillin' in her wheels!

At church on Sunday she was very active during service, heckling Pastor Bob at the most embarrassing moments! As soon as it was over she went to sleep.

I'm back!

The laptop is back in action and I am in the process of re-loading all the functions I had before so I can use it as I once did. It's scary how dependent you can become on technology for everything from banking to chatting! I will try to lessen the effects of another potential breakdown by storing my files externally!

Did I mention I was able to save the files I needed too! Tell me there's no God and I'll provide countless examples of mercies that have no logical explanation!!

We have many pictures to share with you so check in this week to see them! Emma seems to be getting older and wiser by the day and there are both pluses and minuses to that!!

Health wise she is fighting fit, and developing like any other baby of her age. I still can't quite believe it when she tries to grab my drink or thumps me in the face repeatedly!! She's lucky she's so incredibly cute, I tell you!!

Crushed

It looks like the hard-drive is toast! That means we have lost many photographs as well as other personal files. I think we have only lost those we took of Emma in May before our trip, which in the grand scheme of things is not a big deal. In fact losing any computer files is not a big deal!

I've been struggling this week, emotionally. Emma has been a bit irritable (no where near as bad as I'm sure other babies can be!), but worse than herself. When we have appointments, hospital or therapy, I get stressed trying to keep the timing good with feeds and possible naps. Driving with Emma has been rough lately, I am constantly listening for breathing and if she coughs or gags I'm often stopping to get out and vent her!

I love Emma and I am thankful that we have been able to cope financially with me staying home to care for her. However there is one benefit to going to work and that is you don't have to deal with the hours of teething pains!!! Trust me, it's one to miss!

Please continue to pray for us, I know things have been going great since Emma came home, with no major incidents, however it can take it's toll when Scott is working 12 hour days and Emma has not slept well!

Thanks, we feel your love and prayers!!

Good report

Dr. R was really pleased with Emma's progress - including the fact that she is now on the growth chart!! He seems to think the vomiting is due to reflux though, so we seem to be going in circles! Apparently there is no way to know for sure right now as any tests would only measure a short period of time.

That said, Emma will be referred to the feeding team for evaluation and support for feeding. This would be outside of the therapy she gets through Early Intervention, so I'm not sure how that will work.

Dr. R also said that he had Moebius patients who did not verbalize like Emma for two years or more, so she is doing great.

In the meantime we have a high-chair for her and an Exersaucer! I had never really anticipated getting to these milestones, after all it seemed like forever before she could hold her head up. How wonderful that she is doing so great.

Missed it

Emma has a tooth! Can you believe it? I was talking to my Grandma about our teething theory and she asked if I could feel anything on her gums. I put my finger in her mouth and right under her tongue I can feel the sharp little tooth sticking out! I know, I should have checked before but I feel obtrusive putting my finger in her mouth!!

She's definitely been teething then, I guess we'll have to see if the vomiting continues!

The difference a day makes

We were at the shore for two nights and one day, but when we got back on Saturday it felt like we'd had a full vacation! After unpacking and taking a nap Scott and I left Emma with Grandma and Pops and went on a date!

We had dinner at the new Olive Garden (delicious) and then browsed the books at Borders! They had some clearance racks of books and Scott saw just how much I love books! I don't normally buy them as they're so expensive but these were $4/$5 each! I even got one on the Kings and Queens of England, something I've always been curious about.

On Sunday we helped our friends pack their moving truck and spent some time with them. It's so sad to see people leave, but having made a big move myself I know how wonderful it can be.

This week I am working on resovlng my laptop issues and should have it back by the weekend. We also have an appointment at the hospital with the pulmonary doctor.

Emma has been throwing up pretty much every day, sometimes more than once. In most babies that is caused by reflux so no big mystery, but in Emma's case we believe there is no reflux. We need to find the cause and Scott and I believe she is gagging on the extra drool from teething. The gagging is making her throw up. Hopefully Dr. R. will be able to suggest something, other than me suctioning her all night!!

I'll keep you posted!

Beach Baby

We headed to the beach and I think it would be accurate to say I was pretty anxious!! I hate the way sand gets into everything anyway, but with Emma's eyes and throat I was extra nervous!

We put down a blanket and popped up the new tent. She didn't like it too much at first, but after a while (and with all her toys) she was soon relaxing. We were even able to get her to take a long nap!

We did introduce her to the water, but it was cold and she just screamed!

Here's the pictures I know you want to see!

Scott's birthday pics

Beach baby

Yesterday was Scott's 26th birthday and though he is a year older he will be quick to tell you he is not as old as me!! He decided to work as usual but skipped doing any overtime. We headed to the Thompsons house for a BBQ and swim. He didn't realize I'd bought a ton of burgers and hotdogs, they decorated and Mrs T. made a cake. He was pleasantly surprised.

We dipped Emma in the pool but it was pretty cold so she protested somewhat!

Tomorrow we are heading to the beach at Ocean City to visit our friends. I can't believe I'm actually going to take Emma on the beach - I meant it when I said I wouldn't!! However we couldn't resist the call of the ocean and she has done really well in the heat other times. I have purchased a little tent for her (SPF 50) and a beach umbrella (SPF 100) so she should be in the shade the entire time. Plus we have a little spray bottle to keep her cool!

Did I mention it's supposed to be 93f tomorrow, so the beach is where we should be!!

I'm still trying to get used to being unemployed and missing the great times you have with colleagues, but I think it will be easier to deal with in the summer, when I can hit the pool or beach any day. It's not really easy, too much baby paraphenalia for that, but we only have to get Scott the day off!

So close

Sunday and Monday nights Emma slept right through, really - not even a diaper change needed! It was wonderful.

Not last night! Firstly, we are waiting for a delivery of supplies and the probe for her monitor is on it's last legs, consistently not picking up. In anticipation of this we had Emma in our room last night so I could reach the monitor without getting up.

In addition to that issue Emma decided to wake up every couple of hours! Then she decided to throw-up again, in the crib! (Yesterday she waited until I was holding her!).

Quite possibly the worst night in weeks. Our morning errands will have to wait until this afternoon!

On a different topic, Emma really seems to be teething and I have a call in to the surgeon to see if we need to think about detaching her tongue sooner rather than later. (You may recall Emma's tongue was adhered to the back of her bottom lip in January and still is!)

She has also been hrowing up at least every other day! Her GI doc is still worried she might be refluxing at night (reflux makes her stop breathing and lowers her oxygen saturation temporarily - he reason we couldn't leave the hospital for so long.) He may decide to do a different study on her to make sure. I'm trying to keep track of the vomiting.

Despite all the negatives, Emma just gets cuter every day! She seems to be talking more and doing some ineresting things with her hands like playing with her feet, clapping and waving - though not on demand!! All the frustration dissipates instantly when she touches your face or even just looks up at you with those huge hazel(!) eyes.

Windows Vista

I just spoke with a very helpful guy at IBM who has told me how to fix the laptop! I just need a copy of Windows Vista on CD, like you get when you buy a computer with it. Does anyone have a copy I can borrow?

There are rescue CDs I can buy which is still less than buying Vista, and he also said I can get the files of the hard-drive without losing them!!

Good news!!!