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!!!