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!!!