Winter's coming

I just had to take a picture of Emma in this cute bib today. I think it's one of the first gifts we received for her and it's so cute...


I don't know how cold it is outside today, but it's 65 degrees inside our house and it feels cold, well on my feet anyway!! I just put my slippers on and thought I'd better put some on Emma's feet too - here she is in her cousin's hand-me-downs, looking so adorable!


Yesterday Emma used her only form of travel (rolling) to reach the hardwood floor and then get into the entertainment center! Thankfully I moved all the cables and outlets into the cabinet a few weeks ago, so she'd be hard pressed to get to them!

As much work as it will be, I look forward to chasing her all over the house!

Positives

So I realized I may be sounding negative about Emma's post-surgery issues, so I'll try to be more balanced.

As I said, she is drooling more, but it has been suggested that it could be extra drool to help heal the wounds, which makes total sense. And in the meantime she gets to wear all the cute bibs we have for her.

Her therapist had a cancellation today so she came to see Emma as she couldn't on Tuesday. There doesn't seem to be any sign of regression in her body, which the therapists had warned us about. Only that progress might slow down, but no signs of that so far.

Last night she had a dry mouth after we swabbed it with the medicine, so I dipped her pacifier in water and gave it to her. Not only did she take it, but we heard real sucking noises!! (Sucking is something she is not supposed to be able to do!!)

And after 12 hours of sleep last night (the last 4 in bed with me!!) she had a great day and was much less clingy.

Praise the Lord!!

Guatemala-bound

A while ago I mentioned that Scott is heading to Guatemala on a missions trip, and that trip is this month!

For 8 days, Scott and 6 others from our church are heading to the Guatemalan mountains to help with construction on a bible school. In an area where there are relatively few churches, a bible school will train pastors who can start up churches in the area.

Churches are crucial in poorer parts of the world where the gospel can not be advanced on TV or billboards. Not only do they fulfil the call to spread the gospel, but also provide a place of refuge and community.

In 2004 Scott and I travelled to Namibia to work on a bible school there and it was an incredible experience. If we did not have any kids I would be going with him!!

Of course, we need to raise money for Scott's travel but also toward the building materials they will be using when they get there. If you would like to help us with this important trip, we would greatly appreciate your prayer and any financial contributions .

And while Scott's away I will need your prayer for patience and energy!!!

Only Wednesday!

I can't believe there are still two more days until the weekend! I am exhausted already!

Last night Emma slept in our room, in the travel crib. I had to rock her to sleep and then lay her down because she is refusing her pacifier, which is the one thing that helps her to fall asleep! As you can imagine I don't quite know how that is going to go long term, but for this week I am breaking all the rules and letting her nap with me in our bed, and putting her to bed after she falls asleep (her bed - she will not be in our bed overnight!!)

When the weekend arrives we will start working on the schedule again, it will be better if Scott's here too, he can take the crying better.

I've been noticing a few changes since Emma's surgery. The first is that she is louder, but talking less! We are assuming this is because her mouth feels weird.

Another is that she is drooling out of the left corner of her mouth. It is highly likely this is due to the Moebius Syndrome - she does not have as much control of her bottom lip now. She is still 'smiling' in her way, but only for Daddy!! Same with laughing!

Emma has a very short narrow tongue. This is another Moebius characteristic. She has not poked her tongue out and I don't think she can, regardless of the stitches etc.

So far Emma is super clingy and not quite as playful as normal, which is probably the worst part of all this. I am hoping she bounces back soon.

As for me, I'm just trying to make her comfortable and praying that there are no lasting emotional effects of the surgery.

Home Sweet Home

We were able to get to the hospital before Emma woke up this morning, which was nice. She was much more herself today and although she is still pretty clingy and tired she has been playing and babbling.

She was clearly not enjoying her confinement in the hospital room...



She had a new roommate today, a 2 year old hyper boy. I really felt for his mom who was trying to contain him in the room, but on the other side of the dividing curtain. Clearly hospital stays get worse with age!

After the plastics team breezed in and out (yes, there is disdain in my voice!) the PICU team came round and let us know that we had been cleared for discharge, unless we felt that she should be observed for another night. I did not have to hesitate in opting to go right away!

We were home by 11am and Emma is almost herself. It's hard to know where the effects of the surgery end and the willfulness starts!! Thankfully Scott is home with us and he is going to be a big help!

Thank you all for your prayers. We are hopeful that her airway control and sleeping have improved. We have a sleep study scheduled for October 28 which will confirm that.

Good night

Scott and I made the tough call to come home to sleep last night, after Emma's usual bedtime. One of us could sleep by her bed, but I did try to nap in the bed chair and it was not great!! Also I knew I need to get some sleep to be able to cope when she comes home.

I called the nurse before I went to sleep and again just now. It sounds like she slept all night and didn't have any episodes.

Today Scott is going to drive me in before he goes to work and will come and get us when she is discharged.

There are some big differences between Newborn ICU and the Pediatric ICU where Emma is right now. The big one is that she is in a real room, with a door, but it is shared. Her roommate left yesterday morning though!

There is a TV (woohoo!), you can bring food in, she has a window bed and a bathroom in the room. However, we noticed last night that the nurses were not quite as quick to respond when her vital signs change. I'm trusting that that would not be the case when we were not there!! We also did not have to stop at a desk before going to her room - a little too open!

That is enough for me to prefer the NICU for better care! And we still think it's an awesome hospital.

Not good

I'm pleased to say that Emma is doing fine, now. 

 

Following my last post Scott and I waited patiently to be taken back into the recovery room.  And waited. And waited.  I seriously thought maybe they had to re-intubate her. 

 

Then my cellphone rang.  I took it out of my pocket and saw the hospital number on it (I know it well!!).  I answered and spoke to Emma's nurse, in the intensive care unit.  Apparently she was already there and they wondered where we were.

 

As we, well, stormed up there (me more than Scott – he stayed out of my way) I tried not to blame anyone in particular for the oversight of telling us where our baby was.  When I arrived there I stopped trying.  You see Emma had been there since 9am, inconsolable and very distressed.  We arrived no earlier than 9.50am.

 

I will let you imagine how I felt.

 

Of course, she calmed down as soon as I took her and went to sleep.  Her cries are pathetic which is so hard to hear.  Her arms are in splints so that she doesn't put her hands in her mouth.  She doesn't like that as you can imagine.

 

We have put her pjs on so that she feels more at home and as you will see from the pictures and video, she's doing remarkably well and even talking!

 

Our main concern now is that she won't sleep, or let us put her down!!  Good thing daddy is here!

Not good!

Pre-op

post-op

So far..

It was a very early morning, up at 4.30am!!  Emma was confused at being woken up to leave - I never wake her!!!  She was very cute though and behaved super well all morning.

 

Scott got a kick out of our meeting with the Anaesthetist.  As we sat on either side of the gurney, Emma clad only in a diaper and laying on her belly decided to rip out an almighty, well you can guess - she's a Morton.  It was funny, we all laughed!  ("A little gas for the gas man" - Scott!)

 

As it got time to leave pre-op, her nurse gave her Tylenol and Versed (sp?), which acts as a calming agent.  Calming?  She was so chilled out she didn't even squeak as the nurse wrapped her in a blanket and carried her away!  That was good for us as I don't know if I could have taken an emotional farewell!

 

We went for breakfast in the cafeteria and not 5 minutes after we came back tot he waiting area we got the call that it was done and they are taking out the breathing tube before she comes out. I'll post more when we've seen her and settled into the Intensive Care Unit.

 

 

 

 

The night before

Yes, part of me is nervous about tomorrow. The procedure should be straight forward and take less than an hour, but it's the anaesthesia that is the risky part. We will be prayed up and are putting our faith in the Lord, who knows all, sees all and loves all.

I will post news as we get it and am confident that things will go smoothly and be uneventful.

As for tonight, we are keeping things as normal as possible. After bath-time, Scott and Emma take some time to read her Bible before bed...



And here's a random picture from Kali's birthday party on Thursday!

If you would like to view the pictures that have been posted on this blog over the past year you can do so in the blog album. Just click here

Surgery Scheduled

We have to be at the hospital by 6am on Monday!! I know!

This week has been tough. I've been working on a project for my former company (and thankful I am for the opportunity and extra $$!), really only a couple of hours each day and none on Thursday. Grandma Ellen has been great, coming over to keep Emma busy while I work.

However, related or not, Emma has created extra work for me because she has decided not to nap this week! Seriously, it's like she never started taking two hour naps each day.

I can't figure out if it's because our routine has altered slightly, but it's not like we have exactly the same plan each day anyway. Another possibility is that she has been spoiled sleeping with me for a couple of hours in the mornings and wants to for all sleeping! I think this is the most likely and will take discipline on my part of getting up when she does. Great!!

A source of great wisdom, my Grandad pointed out today that a change in routine is good as no-one can keep the same routine going indefinitely.

Of course my main concern right now is next week. If she is clingy and fighting sleep now, how will she be in the hospital!! I guess we'll have to wait and see on that.

One of the good things this week was the speech therapy session on Thursday. Brooke said that Emma has improved in how she responds to the food in her mouth (although I've been rubbish at feeding her regularly!) and also all the sounds and tones she is using in her speech. It was really the first time she has heard Emma as she has always been shy before! This time we put her in the Exersaucer and ignored her. It was a matter of seconds before she demanded our attention!!

This morning Emma and I popped to the pharmacy to pick up her medicine before breakfast. I anticipated it to be a quick trip, just to get out of the house.

I thought I'd share the exchange I had with the cashier, for some reason it seems like it was an important conversation!

It was before 9am, so the store was pretty empty and as the cashier came over to ring up our charge she said she must see the baby! Emma's stroller was facing the counter so she could do that. She started "ahhh-ing" over her and asked if she could smile! I said that she couldn't, which welcomed the "not yet" response!

It may just be me, but I can't let that go! Emma would smile if she could and assuming she just can't, YET seems to me an assumption that she is behind in social development. Sure, the average passer-by has not looked that deep into it, but I have too. Besides, you'll see why it's actually better to elaborate...

So I said "Actually, she can't. She has facial paralysis (more simple and understandable than all the 6th and 7th facial nerve jargon!). The lady responded with "Well, you're a sweetie anyway." She then proceeded to make even more baby talk and cooing to her! She did ask if she would ever be able to smile and I stated that I did not know, the truth!

I need to also mention that Emma, always 'expressionless' also decided that she was not going to move a muscle, anywhere and nor would she talk! She sat there like a sack of potatoes!! I wish she would let everyone see what a vibrant and noisy child she actually is. But no, not this morning!

As the lady told me about how her 6 year old son would love to see the baby, and has been requesting a baby sister from his parent, then her mom called and she was telling her she should see this adorable baby, all the while I am waiting patiently for my two items to get scanned!

However, unlike normal, I actually was patient as the lady asked what Emma was dressing up as for Halloween. I answered that she would be a lamb before I realized that we don't actually participate in Halloween as the majority of people do (it's creepy and that's all there is too it!). Instead Emma will be in costume for Fall Festival at church on October 11 (2-5pm). It's great for kids as they dress up, get candy and play games etc.

I invited the lady (Beth I think her tag said) to bring her son to Fall Festival. She said she might do that. Then she rang up the items.

Now, if I had not elaborated on Emma's 'smile' I would never have had the opportunity to invite her to Fall Festival.

Did I mention that this was supposed to be a 5 minute trip?! Anyway on the way home the dreaded 'check engine' light came on. Two words for you - NOT NOW!!!!

On schedule

I emailed Emma's surgeon and explained her slight cold. He said, and I quote "Generally if the child has no fever, is not coughing or wheezing we go ahead with surgery." Alrighty then! Looks like Monday it is.

Emma isn't showing many signs of being sick. A slightly crusty (sorry Gran) nose and a little loose bowel. If she gets worse I will of course check again! I don't care - no point in doing elective surgery if it could make her sick!

I think I forgot to mention that on Saturday, while we Skyped (video web chat) my grandparents and Emma was yet again reaching for the laptop, Emma shook her head copying my Grandma doing the same, telling her "No"! Alas my parents were unable to get the same response today. But it evens out, we think she said "Hi" to my Dad a while back! (My family are so competitive!!! ;-)

Emma continues to sabotage her own therapy sessions. When the therapist and I try and get her to crawl to toys out of reach she simply refuses and starts clapping and waving. So adorable is Emma, her therapist starts doing it back to her! She'd much rather social interaction than toys. We'll never get her going at this rate!

One area of progress is clear, she's babbling like a brook! All kinds of sounds from whispers to screeches, indiscriminate "mama" and "dada" popping up all the time. I've learnt a few baby signs to try and work with her but it's hard to do if you are holding her or she's not paying attention!

Please continue to pray with us for the surgery next week. We are so hopeful that this could be the final step toward as much normalcy as we can expect, and more fun for Emma! Mmm, food!

I know, it's been a long time since I posted some pictures of Emma. Good news is I have some for you!!

Earlier in the week I mentioned that Emma had pulled herself up to stand. Wouldn't you know that she won't do it again! The good news is I caught the last time she did it (and toppled over) on video! Here it is...

Today Scott helped me by getting Emma back to sleep while I got ready for church. It was so cute I couldn't resist taking a picture...


Then after church we had some friends over to watch the Eagles game and most of us were able to wear our support!

Yesterday I took Emma to the pediatricians. She's been grabbing at her ears more than I've seen before and we worried it might be an ear infection (though on breast milk that should not be so!!). As it turns out her ears are fine, and though she is teething she may also have a sore throat - her tonsils looked a bit red.

I'm not sure what that means for her surgery, or what we need to do so I will be putting in a call to the hospital and will let you know.

At first I was concerned that the surgery would be delayed, but then I realized that might actually be a good thing. Only God knows when the time will be right to detach the tongue so if this is a delay mechanism we will go with it!

Emma has been still napping well and going to bed at night, but she's waking up during the night and wants to get up at 5.30am! Resistance is futile and so she's been snuggling with me and Scott (before he has to get up) and usually I can get an extra hour of sleep in!

The most endearing and infuriating thing is that she seems emotionally distraught when I try and get her back to sleep in her crib, only to become the cutest baby when she comes in to our bed!! I don't wish she'd stay cranky by any means, but I wouldn't feel nearly so manipulated!!

As for today, Emma pulled herself up to stand from a half sit - she was sitting on my leg and held the edge of the ottoman and pulled up!

Great date

Scott called me this afternoon and told me to be ready to go out for an hour when he got home! What's a girl to say but "of course!"

We took Emma to Christina's for the "hour" because Grandma was not available. It's the first time we've left Emma for any length of time with anyone but Grandma, but I wasn't so much nervous (Christina's been paying close attention for a while!), more concerned because Emma has been very clingy and upset today!

Thankfully she was okay after we left. Not surprising, with 3 boys there is enough going on to distract her! When we picked her up she was on the sofa watching over baby Aaron, between Jeremy and Christina. No sooner did I st down than she started to cry and turn bright red until I picked her up! Thanks guys!

I know you're wondering what we did for that hour, and I can't keep you hanging on! We had a delicious dinner at chez Boston Market and a round of Putt Putt (mini-golf). I would like to add that I got two hole-in-ones and we scored the same overall. No - Scott did not let me win! He's as competitive as me!! We had a great time, a fun date in under 90 minutes (an hour was ambitious!!).

On the way home we caught the tale end of a sermon on the radio. As I listened to the encouragement and words of truth I felt me soul lift out of the dumps it's been in this week. I realized I had missed church on Sunday and have less than 100% concentration while holding Emma when I am there. The result, my focus shifts from the hope and strength I have in Christ (of a purpose in this life and heaven in the next), and lands on my daily trials and fatigue!

Feel free to remind me to shift focus next time I get down!

It took 45 minutes to get Emma back to sleep, really asleep. However, a few things were different today.

First of all, as soon as I went in there I gave her Tylenol - she has the fourth top tooth coming in. It's surprisingly easy to forget that there is a reason other than gas and wet diapers for the crying when you are on auto-pilot.

I also told myself that I would just take whatever time was needed to tend to her. I can always go back to bed after - something I could never do before the baby, once up I was awake! I guess it's good that babies teach you to sleep anytime!

This might sound crazy, but Emma is not very needy at all. If you keep her fed and dry she is happy. Maybe that's because she wasn't held a whole lot when she was very young, who knows. So when she is clingy, like now because her teeth hurt, I don't realize that she just wants me! I try to fix the problem and then get her situated. What makes it more complicated is that she wants me to hold her while she stands up!!

I am thankful as I realize that Emma has not been sick really since she came home, and her other teeth came in without much stress. And as we face surgery in the next couple of weeks I am also thankful of this reminder that Emma is not immune to pain.

What a difference it makes to your feelings when you change your thoughts!

Wanted: Patience

I have learned and re-learned the same lesson many times over, yet I still struggle to remember it.

You see when Emma wakes up before she has got enough sleep and for whatever reason, will not be comforted and laid back down I get really frustrated. You see, I want what is best for her, but no matter how often I tell her she needs the sleep she won't listen!!

In the afternoon I will bring her downstairs for a while and then put her back up later. In the morning though, when I am low on sleep myself it is hard to be objective and think calmly. I have been trying to leave her in her crib but if she's awake, she won't stay in there. (I hear tales of babies that sing or play by themselves when they wake up, but I think it's a myth!)

Today was one of those days and I had to leave Emma to cry for a while. Eventually I gave up and brought her into my bed, where she happily lay there chatting and playing with a toy! When I woke up she was asleep next to me - perfect!

Only after talking to her therapist today did I learn that it's okay to bring her in with me in the morning! It's just really bedtime and maybe naptime, where she needs to learn to fall asleep herself. She does that in my bed too!

I know it seems crazy to some. Why not let her cry it out? One reason is that her heart rate shoots up when she cries for too long or she kicks her feet, both setting off the monitor. that's only slightly less hard to listen too than her crying. When she is screaming and practically making herself sick I can't listen, it's torture.

So, in conclusion, I'm still learning this patience thing. I do feel selfish, wanting sleep and time to eat lunch etc, but that's something else that I'm working on!

What's the point? If I feel like such a bad mother with just Emma, having a second child would surely be insanity!

Weekend Break

This weekend we were invited to spend visit some time with friends near the Delaware beaches. Not ones to turn down such an offer we packed up the car (and with Christina's family) we hit the road.

It turned out to be a beautiful weekend and we were able to go to the beach, in September!

Emma made the transition well and after the first [late] night she kept her sleep schedule well, and Scott really took care of her most of the time, so I got extra sleep too! He's the best!

The rest of the time we were spoiled by our hosts, who cooked for us, allowed us to sleep in and gave us a wonderful retreat. Thanks guys! We'll be back, soon!! (It's okay, they did invite us back!)

Here are some pictures...

FYI

For Taryn, and anyone else who missed that posting (!) Fred's Footsteps is a family trust that provides financial support to middles class families that find themselves in financial crisis due to a sick child. The support is limited to one year and a certain amount, but they paid our mortgage and car insurance for two months after Emma came home, and the big car repair bill, so that we could get ourselves together in the new situation.

Fred was the head of Independence Blue Cross and when he died at a relatively young age his wife and kids set up Fred's Footsteps in his memory.

Great cheesecake

Tonight we three headed to the Philadelphia Country Club for dinner. No, we're not living above our means, we were invited to a fundraising dinner by Fred's Footsteps. They had a golf day and auction as wells as the dinner.

The drive in was past luxury homes that only the super rich can afford so we knew it would be a swanky affair. When we arrived we were greeted like special guests by the family of "Fred", we were humbled!

We mingled amongst the guests and peeked at the golf scores. The first players name was Dick Vermeil (famed Eagles coach). I pointed it out to Scott as the man himself walked up. Scott shushed me with "act cool!"

It was later as I tended Emma inside and Scott visited the rest room that the coach actually approached me (mistaking Emma for someone elses baby). I tried to hold his attention until Scott came back but lost it with a very uncool "her daddy is the biggest Eagles fan"! He made an excuse and walked away! Don't judge me - I tried!

Dinner was great and dessert, better!

They showed the video that included our interview before starting the auction. I think the average selling price of things was about $4/5K! We hope they were able to raise enough to help many more families like ours this year.

Of course, Emma was a star and everyone fawned over her. We were worried it would not be good taking her because she's been teething today and the Tylenol had to come out, but a fussy Emma is still actually pretty good compared to many teething babies!

What a week we've had, Emma has been showing us new things!

In addition to the bridge she made earlier in the week (lifting her body off the floor), just this morning she went from a sitting position to her belly - intentionally!! And more than once!

We now have three distinct syllables to listen for: ma, da and na! Amongst all the laughing (Scott, Pops and Jeremy Sr. are her favorites!)

Standing is really where she wants to be and unlike most kids, she keeps her feet flat on the floor. What's the significance? According to her therapist, standing on tiptoes is a way of keeping the body's center of gravity, rather than correcting balance using posture.

Considered rude in some cultures, pointing is a new thing with Emma. She has done it before, but now it seems to have intention behind it. For example, last night she was pointing at Pop's glasses and when he moved closer she hooked them with her index finger and pulled them off!

The body-brushing goes well, if you keep Emma amused (otherwise she grabs the brush!) I discovered that Old MacDonald is her favorite song and keeps her entertained - pausing for the applause she gives me, of course!

Yesterday I cleaned up her room (I've been looking for things to put in our yard sale tomorrow). There are a bunch of clothes she never will/did wear due to the size being wrong for the season she will be in, so they are going. But I also put away some things from her infancy - her mobile, swing etc, that she just doesn't use anymore.

Tomorrow Emma is 10 months old! I can hardly believe it. We really haven't been able to look too far ahead, it's enough to focus on the here and now. So looking back, the past 10 months have gone sooo fast and, praise God, we've not only made it, but we've had an incredible time.

A member of Scott's family has been diagnosed with breast cancer, and while we are standing with her in prayer for healing I also want to pass along this message she forwarded:

The Breast Cancer site is having trouble getting enough people to click on their site daily to meet their quota of donating at least one free mammogram a day to an underprivileged woman. It takes less than a minute to go to their site and click on 'donating a mammogram' for free (pink window in the middle).

This doesn't cost you a thing. Their corporate sponsors/advertisers use the number of daily visits to donate mammogram in exchange for advertising.

Here's the web site! Pass it along to people you know.

http://www.thebreastcancersite.com/

Emma was up early this morning, well 6.30am. Since she didn't go to bed until 9pm last night I knew she had to get more sleep, so I sacrificed my time (!) and laid down with her in my bed! Eventually she stopped fighting and fell asleep! We woke up at 9am.

Great, right? Sure, except that I wanted to feed her at 8am because I wanted to feed her lunch at 12pm! As it turned out I did that anyway, because I was meeting a friend for lunch at 1pm.

As we pulled into the parking lot 3 minutes early I was thrilled, it's quite rare these days! I decided Emma could go in the big stroller and stay in there during lunch, rather than a high chair (naptime was coming and she could lay back in the stroller.) However, it was not to be!

I always leave her feeding tube attached for a journey, in case she gets wind and I have to vent her. When I took her out of the car seat the tube came away, and you guessed it, so did the g-tube! I had refilled the balloon with water that morning because it was looking loose. Turned out the balloon had burst!

Frantically I called Scott, as a sleeping Emma squirmed in the seat, open hole in her belly! He calmly instructed me to put it back in and tape it in place (as we learned in the hospital, and I breathlessly asked if I should do!). He called my friend to let them know we'd be back in a half hour, and I drove home.

(Note: speed limits do not apply when there is a "medical emergency" as I prepared to tell any policeman who stopped me!!)

Now, I replaced the g-tube without incident and we made it for lunch at 1.30pm, but not for the first time did I wonder when it will get easier to take Emma out!!

At lunch Emma was waving to the diners nearby, as she does always. I held back my urge to tell them that she would be smiling at them if she could. I know, I have issues, but at the hospital yesterday the phlebotomist (draws the blood) was like "what's wrong?" because she wasn't smiling. Thankfully she attributed it to Emma knowing what was coming!!

After consulting with her nutritionist, I'm pleased to say that her weight gain is now consistent with a breastfed baby, and her growth in length - weight gain at a higher rate than her growth makes a fat baby!!

During therapy yesterday Emma had another first - we were trying to get her to crawl and she actually lifted her belly off the floor, on her hands and feet! Her therapist and I were both very excited, but Emma was not amused at being made to work! But we know she has some strength in her legs!!

During therapy our main focus is on getting Emma to roll over, reaching for things and also to push around with her feet. Emma, however, is content that two of us are paying her attention, sitting close by, and prefers to play with her hands and feet, if no toys are in reach!!

Needless to say that when the TV is on, she'll watch that instead too! She'll even lay there and drum her fingers on the floor when no-one's around, rather than work to get the toys! I've taken extreme measures now, putting all toys out of reach!!

Today we headed to the hospital for Emma's pre-op appointment. She got weighed (16lbs 9oz) and also had some blood drawn - she took it very well!

Her surgery is going ahead on September 29. She will be in hospital for a minimum of one night.

We would love for you to join us in praying for the following things:
Continued good health prior to the surgery (anything could delay it)
Successful and uneventful surgery
Speedy and complete healing
No apnea following recovery (she will likely get another sleep study to confirm)

Weekend Update

We had such a good weekend and the three of us got to spend lots of time together, and with friends.

Saturday the weather was horrible, so we headed to church in the morning to help out behind the scenes and in the afternoon Scott and I exercised our competitiveness by playing on the Wii! How did we have so much fun? Well, Emma is now taking 2 hour naps in the afternoon!! Finally, we got a routine down!!

On Sunday, a beautiful day (still summer here!!), we headed to church. After service, Emma and Nate posed for the family paparazzi again!!

They also shared a tender moment.

After church we came home for the first Eagles game of the season. Of course, Emma was up for the first hour of the game and cried every time they made a good play - Scott screaming "YEAH" was a new experience for her! However, when 2.30pm came around she took a nap until 5pm! (I sneaked a nap in there too!)

In the evening we went over to our friends house and as always, Scott was playing with our Godsons. Unfortunately Nathan fell off the "horsey" and Scott grabbed his arm to stop him smacking his head. However in doing so, he popped his tendon! I think it's called nurse maids elbow. Fun over!!

I headed to the ER with Christina, but thankfully they are able to treat it without putting us in a room, so we were only there about an hour! Poor ?Nathan.

Go EAGLES

This week was different than a lot of others, in that Emma and I went out most days. when she is healthy it's great, she doesn't worry me that she may choke, and the lower feeds mean she needs less venting, so I don't have to wait as long after feeding her.

I am a little nervous that are routine may be disturbed after Emma's surgery though. Emma's tongue used to block her airway when she slept, or just lay down (one of a few factors in her apnea). The doctors adhered the tongue to her bottom lip as a way to prevent it, hoping that as she grew the tongue would not be a problem. When they detach the tongue on September 29 we will all be waiting to see if it worked.

I don't know how much of your ability to keep your tongue forward at night is a reflex controlled by nerves. We don't know how many nerves Emma may actually be missing, which may be a factor in this.

With the winter ahead of us, cold and flu season approaches!! If you recall, when Emma was discharged from hospital we were told to keep her out of childcare, and generally away from people! A cold is very difficult for her because she doesn't automatically swallow like we do, and the secretions build up. She'll get the flu and RSV shots of course. I have been getting more relaxed about other holding her etc. but I will be more protective during this time (like it or not!) and the hand sanitizer will be out!!

96 degrees

That's the temperature on the car's thermometer today! So we squeezed the last drops out of the summer and went to the Thompson's pool before it closes for the winter. Emma and I were joined by Christina and the kids (Jeremy, Nathan, Aaron and Kali) for about 3 hours.

Emma enjoyed floating around the pool as always and especially likes being held and "swimming" around.

When we finally got out I went to change her out of her suit (which is VERY tight nowadays) and found a surprise!! Emma is pretty regular so finding a deposit was a big surprised (and a relief that it stayed in the diaper!). As Christina held her up under the arms I pulled the swim diaper down and, as you guessed, was unable to spare her legs!!

As the swim diaper is now too small anyway, and summer is over, I just threw it out! I don't even want to think about trying to clean it!

Oh the joys of parenting!!

As you've been so patient, here are some snaps of the past few days!!

Trying to stay warm waiting for the pediatrician!

Meeting Abby (our friends 1 year old) for the first time!

Mosquitoes are no match for a net skirt at the BBQ!

Only babies are this flexible!

The sanitary way to suck your thumb!

Can you say Dada?

The laptop is still working but shuts off when it overheats, so I am rationing my time on it!! Not knowing what exactly is overheating, I am backing everything up so that if it really goes I won't lose anything.

I haven't been on the webcam as much as normal and it's surprisingly difficult! I miss chatting with my family - we don't use the phone, it's not the same.

Emma is doing great and has been sleeping for 12 hours overnight and even taking good naps!! Her surgery is a go for September 29. We're praying and hoping that her apnea does not get worse afterward.

Scott and I are doing fine, Emma's extra sleeping is affording us more sleep also! Scott's back to overtime this month, and then in October he's heading to Guatemala!! (I'll elaborate on that later in the week!)

Just perhaps we are starting to get into a routine!!!

Sad farewell

This week has been tough. Aside from the usual craziness of raising Emma, we lost a dear friend to brain cancer after a 22 month battle. Words can't describe who Matt was, so I'll just say I have never met anyone who displayed the love of Christ so deeply. HE is loved and will be missed by all who knew him, literally.

Nap time

We've had an encouraging few days sleep-wise. The past couple of nights Emma has slept through until 4-5am, without desats, which means I get a solid 5 hours of sleep! She goes to bed between 7-8pm usually, and I have been encouraging her to go back to sleep until 6.30-7am, so she is getting between 11-12 hours per night.

Last night we came home late, but Emma had been sleeping since about 8pm. We put her to bed and she did not even stir. as I cleared up downstairs Scott was in charge of hooking up the night feed. I heard "Debra" in a very loud whisper from upstairs, "come here." I went up to see what was up and Emma was in bed, sucking her thumb! It was very cute. (we always call each other in when she looks especially cute!)

Emma still needs 2 good naps during the day, and this week I've had her take at least one nap of an hour or more each day. This is definite progress, and it is really dependent on how much sleep I got the night before. Only when I am not tired do I have the patience to let her cry it out and go back to the sleep mid-nap!!

Today we are heading to the hospital, but not for an appointment! We have a meeting for the breastfeeding committee and Emma is coming with me as many of the people at the meeting helped to care for her in the NICU. It's 1-2 pm so I'm aiming to give her a morning nap and then she'll probably fall asleep on the drive home!

Cutie

Emma was on rare form yesterday, talking for the speech therapist, playing with the occupational therapist. Here's a video...

I can't say anything for sure, but I have never seen her this talkative, for such a long time, and playing with her feet like this also. She's the same today, at 7am!! I can't tell you how cute it is!!

Can we attribute it to the brushing? Who knows, but hearing Emma say "mama" over and over is one of the best sounds ever (albeit indiscriminately!)!!

Milestone

Tonight we went to Olive Garden with most of Scott's family - never-ending pasta bowl is back baby!!

We took Emma, of course and decided beforehand to try her in a high-chair, rather than the stroller.

When our food came I sat her int he high-chair, put her cloth book and teething toy in front of her and proceeded to chow down on my salad and breadsticks (mmmm!!)

It was just a few minutes later when a woman came over and said [something like] "I just wanted to tell you what a good baby she is! My husband told me to turn around and I saw her, but didn't even know she was there! And she's so little!"

Emma was wearing jeans and a pink t-shirt, but is still pretty small for a high chair. She sat there for the entire meal, content checking out the place. Only toward the end did she start chatting and reaching for my face - not even to come out!! That was pretty good considering the meal finished past her bedtime and at supper time!

While we ate I kept looking at her and it was quite special to see her there. I don't think we'd ever let ourselves imagine this far ahead! Not that we thought she wouldn't make it, but just grasping the present is often enough for our brains!

Our little baby is growing up!!

When we got home, Emma got a bath, supper and Scott brushed her face. Here she is as she tries not to pass out on the floor...

Pictures

On Friday Emma showed us what it
will look like when she gets stronger!
(This was posed and wasn't long before she flattened out!!)

She does love to stand up though!

Sleeping like an angel!

Emma has discovered that she like to chew on Daddy's finger!

Reading her book on the plane.

She liked looking out the window, but when she started to bang on it I had to move her!

Emma stole my seat when I hit the bathroom to pump!

Emma's first time in a restaurant high chair,
if you can call an airport McDonald's a restaurant!

Emma was pretty comfortable in the baby carrier for the journey.

Emma meets Snow White at the airport!

The laptop is still under suspicion but is working for now!!

Healed?

So I'm writing this from my laptop! I'm not sure if it's completely healed itself or just playing with my mind!!

If it's healed, I'll be posting pictures in the morning!!

Day Trip

13 hours, to Florida and back again in one day!  Sure, it was hard for me to go to Orlando and not shop, sunbathe or just relax, but we shared the motto of Southwest Airlines - Get there. Get it done. Get back!!

 

The flight was marred by tropical storm Fay, hovering over Florida, and though she did make it a bit bumpy in places the flight was early and not bad at all.  (Scott might tell you different - he was not a good flier yesterday).

 

We arrived at the hotel with time to spare and met Jenn Clarke there.  She is a nice, down-to-earth lady, trained in the body brushing therapy by her then husband and she is continuing his work.  Others were trained by him before he died, but they are either no longer practising or are using other methods as well. 

 

Jenn did a range of test on Emma (like seeing how her pupils react to light, whether her hand closed reflexively on something brushed across her palm) and identified some infant reflexes that should have passed, but are still present.  The brushing should help them to pass and the adult reflexes to come in.

 

We shared our testimony and faith with Jenn, which she seemed to really appreciate.  We did also mention the faith we were putting in the finances and, connected or not, she knocked $75 off the $500 we were supposed to pay!!

 

Our questions and concerns were addressed and we both felt that this was a good thing.  So, we are pursuing the treatment.  Our next trip to Orland is October 23. 

 

We have some great pictures from the day that I'll post when I can get the laptop online!

Our laptop has died again.

Please bear with us and we will update you as soon as possible.

And your prayers for it to fix itself would be appreciated!!

Nap update

Last night Emma slept right through, on her mattress (no pillow!).

This morning I put her down for a nap at 8.45 and she slept until 10am. She did wake up and fuss a few times, but settled down again after a couple of minutes!

What did I do different? When she woke up after a half hour I changed her diaper and left her alone! She is now also able to sleep on her belly and I found her like that every time I checked on her! (They say it's okay once a baby can roll over!). I also found her with her feet sticking out the side of the crib!

Afternoon nap was not as smooth, but I think I may have put her down to early! We'll try it again tomorrow!

Phew! This parenting business is so fickle!

Emma with Maryanne, her occupational therapist

Dog tired after therapy!

Making the most of messy sweet potato!

Sitting like a big girl!

Showing off!

Insomnia

I can't take it anymore!

As you may recall, a few months ago we were having some issues with naps and they seemed to get resolved, with Emma sleeping for a good solid 1-3 hours during the day. Somehow, some way this got messed up! Sure I miss being able to take a nice nap myself, but more than that, she is 2-3 hours short of the optimum sleep she should be getting, so important for a baby. What's more, she wakes up screaming for a few minutes and I am not good at handling that.

Emma will no longer sleep for more than 30 minutes during the day, unless she is being held! I would love to hold her for a couple of hours, but I have too much to do while she sleeps to sit there for that long.

Her therapist has suggested putting her in her crib between feeds (minimize reflux) for naps and not relying on the little doze she has during feeds. In fact I'll be keeping her awake during feeds! Then we'll try putting her in her crib at the same time each day so she gets the idea.

We have been putting her to sleep on a Boppy pillow, for incline, but will need to take that away so she can move herself into a comfortable position. We can incline the mattress instead.

How long will all this take to reset her clock? Not sure! I'll start when we get back from Florida! Don't expect to see me at 2pm for a while! And when you do, I'll likely be a zombie!!

Good news or bad, first?

Emma had her second esophogram today, but before I get into that let me tell you why hospitals and airports are so similar!

They make you get there way too early (7.30am today!!)
They make you wait way too long (45 minutes with a 9 month old - HELLO!!)
Every second feels like an hour
Every time someones name is called you think it's going to be yours
There are no conveniently located bathrooms!
They look clean, but really there are germs everywhere!!!

That said, now for the results!

I opted for the bad news first, which is that the wrap (aka nissen) has loosened, which means that reflux is meeting little resistance in travelling up. Additionally a small part of her stomach has herniated above the diagphram. This is not serious, as long as we don't see any additional problems. At this point they will not have to do surgery on her stomach again.

The good news is very good though! Firstly, she is not vomiting as much, a few times a week, versus daily a few weeks ago. Emma is gaining weight well (16lbs 5oz) but there's more fat than lengthening!! This does mean we can lower the volume of her feeds, which is great because she gets very uncomfortable at the end of a feed. This should also reduce the reflux.

We have dropped one of the medications which seemed to only increase her drooling! This also means I don't have to remember to give her meds a half hour before each feed (woohoo!!).

All of this news, some of which we'd guessed, does help us understand her more and also try and work around it for naps etc.

P.S.

I forgot to mention, when they gave her some of the contrast dye for the esophogram by bottle, she swallowed it and it went to her stomach not her lungs!! Yay!

Internal diatribe

So Saturday is the big day, you know, the most expensive daytrip ever! We are going to Orlando and back in one day, to meet with Jenn Clarke from the UK. Her bodybrushing technique has apparently helped many people with Moebius Syndrome.

Just going puts us in quite a dilemma. We are investing big bucks in this initial assessment and possible first treatment session, and we do not even know if/how the brushing can help Emma. I have been struggling with the potential guilt I will feel if she tells us she can help Emma and we begin, only to run out of money down the road (or round the corner!).

It did just occur to me this evening as I shared my fears with Scott that even if Emma gets the brushing, it will not cure the Moebius! (Only a miracle can do that.) That does not diminish the potential improvements to the quality of her life, however it's not like we are looking at a life/death situation. In fact, us going broke to get the treatment may be more detrimental than not having it at all!!

From her therapists I have heard open minds, but also encouragement that she is doing superb and her muscle tone is improving greatly and while brushing can help, they don't forsee any concerns with her progress.

So there you have it, the inner working of my mind, for now!!

Soapbox

I have come to the conclusion that the world is going mad.

On the news this morning they said that college profs are advocating for lowering the drinking age limit to 18 so kids won't binge drink at college. I guess the logic is that legality breeds maturity.

HELLO!!!

Having grown up in one of the countries where 18 is the age limit I can firmly say that is not the case! My peers were drinking by age 16, and I even joined in occasionally (I was not a fan of the cheap cider and beer that was available!!). By 18 we were hanging out in pubs and "binge drinking" on the weekends.

From Scott's perspective, he was in rehab at 19, 2 years before it was legal for him to drink! Would a lower age limit have prevented this? As he was drinking before 18 I don't see how.

Is no-one thinking about the social and personal consequences that there might be? Drunkeness often leads to violence, and other bad decisions (yes, I'm talking about sex), not to mention the increased likelihood of alcoholism at a young age. Alcohol is also a depressant, which is not good in an age where youth are under so many pressures that lead to depression by themselves!

Whatever your stand on alcohol in general, I feel this is a seperate issue. Our youth are being forced to grow-up much faster than they are able in reality. Why are we even contemplating putting this responsibility on them?

We need to tackle the reasons behind the drunkenness of our youth, not legalize it. What message doess it send - if you ignore the rules long enough they will be changed in your favor?

It makes my heart ache that adults are actually allowing the demand of kids to be allowed to drink to influence their opinion. We don't let 5 year olds tell you what they should be eating!!

As for the Bible, it's very clear in it's instruction for all...

Ephesians 5:18
Do not get drunk on wine, which leads to debauchery. Instead, be filled with the Spirit.

Luke 21:34
"Be careful, or your hearts will be weighed down with dissipation, drunkenness and the anxieties of life, and that day will close on you unexpectedly like a trap.

Romans 13:13
Let us behave decently, as in the daytime, not in orgies and drunkenness, not in sexual immorality and debauchery, not in dissension and jealousy.

Galatians 5:19-21
The acts of the sinful nature are obvious: sexual immorality, impurity and debauchery; idolatry and witchcraft; hatred, discord, jealousy, fits of rage, selfish ambition, dissensions, factions and envy; drunkenness, orgies, and the like. I warn you, as I did before, that those who live like this will not inherit the kingdom of God.

Why should you care? Because you have children, grandchildren and friends who need to know that they can destroy their lives trying to fill the void in their hearts with booze.

What they, and everyone else needs to hear is that it's a void God left in each of our hearts that only He can fill, as a homing beacon that would lead us to Him. I can't say it any better than that, it's the story of my life.

Nightmare

As I carry Emma upstairs for her bath I somehow mis-step and fall. My arm was behind her, so I don't think she got hurt, but from the way she screamed you know she was scared. Possibly I was more scared.

She recovered pretty quick and we made it to the bath tub in one piece. I have a routine for giving Emma her bath, and the last part is washing her hair. (Because of the Moebius we are careful not to get water on her face and eyes.) As I pour the water over her head she decided to look at it and I promptly pour water in her eye!

Thankfully I'd already made brownies, so I had some to unwind later!!

Last night Scott and I stopped by McDonalds for a caramel sundae! As we sat in the car eating it Scott said it reminded him of when Emma was in the hospital, when we would get McDonalds at the hospital or stop by on our way home. That got me thinking, particularly of the first night we spent alone with Emma, in a family room in the NICU.

Back on February 23, as we prepared to bring Emma home we spent the night at the hospital with her in our room. It was possibly the worst night of her stay at the hospital. I was terrified that there would be an emergency or something. I don't think either of us got much sleep and we watched the monitor constantly. Despite there being a nurse watching the monitor from nearby.

Of course we got through it, and every night since! We don't often have the time or presence of mind to think back on the hospital experience, in detail! We know that we had incredible peace and faith during the experience, so it's interesting that when I think back to some of the things that happened I feel all the emotions that we would have felt then if it were not for God's grace!

It's even harder to believe when you see the precious gem that we live with now...

On Saturday I had some 'me-time' and went shopping with that Target gift card! I bought some winter outfits for Emma, just leggings and tops mainly, comfy things for day to day wear! I also bought a work-out mat so I can do Pilates (yes, I'm still trying to get it going) without hurting my back.

It was nice to get out without the worry of Emma needing me in the back seat. You'd be surprised at how the stress of that discourages me from driving places. That said, I missed her and couldn't wait to have a cuddle when I got home.

Scott and I stayed in for the evening and watched the Olympics.

____________________________

Sunday we headed to church as usual, but I was unaware of what a great service we would have. Let me just share the basic message with you - it's simple, but important...

Jesus Christ said he is the Son of God and savior of the world. He said "I am the way and the truth and the life. No one comes to the Father except through me."

Do you believe him?

Weakness

I feel so lonely right now. I wouldn't even write this, except that I feel this is the only place available for me to talk. I know of plenty of people I could call, I can even imagine their questions, so...

I know I'm not alone and no, I don't feel like this all the time.
Yes, I'm very tired, but no, the baby won't take a nap!
I can always go out, except today, because I'm waiting for a repairman who's due between 8-5.
I have friends I can call, but I know they are busy.

I saw a picture of a city street this morning and a memory hit me of leaving my apartment on a fall day (no specific day) and walking around the city. Was it nostalgic? No, I am under no illusion that I was not happy living alone in the city, or anywhere for that matter!

Nor am I resentful of being home with my baby. I don't feel like I need a break from her (though cooperatign for a nap would be nice!!) In fact, when I cried and she started crying I picked her up and she tilted her head as she does and said "aaa?" It's hard not to smile at that!

I turned the TV off because it was actually making it worse!

So as I write I start to pray for comfort and peace. Sure it's comforting to know that our lives have a greater purpose than we know, but somehow that makes the down-time much harder to understand or deal with.

I have heard people talk often about coming to the end of yourself, when you do not see what else you can do, as the start of seeing God work in you. It's not a one-time deal, it's daily asking for purpose, strength and above all a real sense of the unconditional love that surrounds each of us, whether we feel it or not.

And that's when it hits me! I'm not alone, never am. Jesus is never too busy to listen, will not condemn me and already has made me feel better!

I guess I'll post this now, just in case you ever need someone to talk to, too!

Go EAGLES

Our filming session yesterday went well and Emma was so well-behaved. She sat on my lap with her pacifier for the whole interview, well, she fell asleep toward the end! Apparently it went well, but I think I probably bumbled my way through it! We'll see when they finish it. We have been invited to the Fred's Footsteps fundraiser where they will play it! Free dinner - we'll be there!! Did I mention they brought a great toy for Emma and a Target giftcard as a thank you for us? Uh, you gave us plenty, the interview was the least we could do!!

This morning I was able to extend Emma's sleep to 7am by bringing her in with me at 6am! We then took a nap about 10am til noon! Don't judge me - she got me up quite a few times during the night and didn't take a nap at all yesterday!!

The physical therapist came today for her monthly session and was really pleased with Emma's progress. Merle is focusing on Emma's overall strength and coordination. I asked if she thought we should ask for weekly sessions and she said she's really not concerned about Emma. She is doing everything that is "normal" for a 9 month old. The only area she is weak (not necessarily behind) is crawling and we can work with her to increase her arm and abdominal strength to help with that. As for walking, she wouldn't necessarily be considered behind until she is 2 years old ("normal" is 12-14 months) because all babies vary.

I've talked to both therapists about the bodybrushing (we fly to Florida for the day next weekend). They are skeptical, who isn't given that only one person in the world can do this special technique, sounds dodgy. However, they can't tell us it's rubbish. In fact it's tough to get any authoritative opinion, after all even some doctors don't believe in miracles, so no-one knows all but God.

Tonight was the second pre-season Eagles game, the first that we have been home to watch. The game kicked off at 8pm, which is Emma's bedtime!! No problem, right? You clearly haven't been at our house during a football game! It's loud from the very beginning. Scott likes to interact with the TV for each play, and often encourage the team!

As you can imagine that is not the best idea when you are putting a tired, but awake baby to bed! However I was pleasantly surprised. Every night we've put her down early she fusses for a couple of minutes but goes to sleep pretty quickly, and the same tonight. In fact, she has stayed sleeping the whole evening and we haven't been keeping the noise down at all.

So, I can conclude that the 8pm bedtime is a winner, for Emma! As for us, I guess we'll be home early each night for a while!

Prayer Requests:

• The doctors may postpone the tongue-lip detachment. Please pray that they make the right decision, whatever that is.
• We are going to Florida on August 23 to meet with the bodybrushing therapist from England. Jenn Clarke will evaluate Emma to see if she can help her. We need wisdom in deciding if we pursue the treatment, should Emma qualify, whatever that means.
  

Ready for my close-up!

Today is the day that a crew from Fred's Footsteps come and interview us, on camera, for their fundraising video. Of course, they are really just interested in Emma's story and how they helped, but that didn't stop me from cleaning the downstairs and making sure the house looked ship-shape!! (Mum, you should be proud!!)

When did I do that? Why, 11pm last night of course!! It wasn't too bad though, I was watching the Olympics at the same time (more on that later!)

Today, I grabbed a shower during Emma's 15 minute lunchtime nap so I can look presentable, and Emma is dressed in a cute little outfit...


Now, I have never been a sports buff, I didn't really care about them at school and none of my friends were really into it either. True, I am enthused about NFL football now, I'll even watch baseball, but perhaps it's because I didn't grow up with them. The Olympics never interested me at all, but now I find myself following them and cheering at the events! I will credit Scott for always wanting to watch the sport on TV.

The really strange part is that I'm cheering on the US teams! No, I have not forgotten my British roots, but it did take me a little while to realize that it's hard to cheer on a team you don't see! Really, why do we only get coverage of the USA, China and Russia? The media is so biased!