Summary (sort of!)

We have a phrase in the UK/our family that perfectly sums up how I feel today - "Death warmed up"!

The shingles is basically a few small patches of itchiness with some pin-prick pain thrown in. The tough part is the toll fighting the virus takes on your body. I think the worst part though is the whole icky skin issue. I truly felt like a leper last night! Of course Scott is awesome and will not let me get down! A foot rub is better than any medication!!

I woke up today feeling like I have flu - achy, sniffly, foggy and slow. I have opted not to take the medication because it apparently shows up in my milk in large quantities. I hope I feel better to celebrate Emma's birthday next week!

Emma slept with us for a couple of hours this morning and sounded a little sniffly herself, however she woke up first and when I turned the light on she was laying across the bed with her feet in the air, gnawing on her monitor wire! You can't help but laugh at her tenacity!

Today we have therapy at 11.30 and then a hospital appointment at 3.30pm. You know what that means - I have to take a shower! A pain on any day!! I want you to know I did call the hospital to get clearance for us to go in. Scott thought that was funny, I'm too organized! I just know I would want others to take the same precautions.

Here's an update on the feeding situ: We dropped adding the carbs (Polycal) and they nixed me increasing the volume as that may contribute to loosening the wrap that stops the reflux! So far we have almost exhausted all the ways to add calories! The docs suspect she has "dumping syndrome", which means her bowels push the food out fast without absorbing nutrients leaving her also with low blood sugar, which is why she falls asleep after those feeds.

The new tactic is to add cornstarch to her milk! It is a complex carbohydrate, so should take longer to digest, giving her more nutrients. Please make this a prayer priority. The gastroschisis bowels is the cause, not the Moebius!

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So after a while (and a shower) I am feeling semi-human (versus sub-human!). Emma graciously went down for a nap at 8am and is still there now! I got a call from her therapist, wisely calling off today's session - she sees too many kids to risk it.

Before he left for work Scott told me not to worry about cleaning up anything, he would do it all when he got home. Apparently that is like waving a red-rag to a bull! I did just the opposite - not intentionally disobeying! It started with unloading the dishwasher and washing up the dirty dishes!

Then, Emma has started moving toward the wood floor to bang her toys on it! There isn't much exposed in the living room so I wanted to shift the area rug to give her more space. It needed a vacuum anyhow! There are two sofas and a recliner on the rug though, so I had to move them off first. Then I realized it is November and the Christmas tree will go up in a few weeks, so I should shift the sofas round to make room!

As I did it the shingles started to tingle, but I had super-human strength!

I don't know what it is about being sick, but I get anover-whelming urge (more than usual) to clean everything! This could work out!!

Go girl!

If you have not been checking the blog daily these past few months, now is the time to start again! The past few days we've brought you dancing, laughing and many more great moments. Today you get not one, but two classic, wonderful, hilarious moments in Emma's life!!

Enjoy...

I don't feel all that great, but Emma really gave my heart a lift.

Great news!

Not really! Actually horrible nasty news - I have shingles! Sure, it's mild and so far just a small irritation but it will likely get worse before it goes away! How? Emotional stress is one cause, but I know I've not been taking good care of myself lately, not sleeping enough etc so I think I allowed it.

Can you believe it?! I am so careful to try and stay away from any source of germs (sad as it is that often means kids!) and wash my hands constantly it really doesn't seem fair. Oh well, what is!

What does this mean for Emma, just 3 weeks from getting immunized against chickenpox? Nothing just now. We have to be careful that she doesn't touch the spots, which are on my tummy and back, so no biggie. Oh, and pray constantly that she doesn't get it.

I did freak out when I saw a red mark on her chest today but the pediatrician says it sounds like dermatitis, which could be because I didn't wash the dress she wore yesterday after buying it, before she wore it. Who knows? I'll be keeping a close eye on it though.

Please pray for us - I'm not a good patient at all, which means all 3 of us will suffer if it gets worse!

Dancing Queen!

Emma seems to do something new each day and we get a kick out of it all! Some of the toys we got her when she was younger, and seemingly uninterested in she now plays with. I know they have ages on them but she doesn't follow that!

One of the bad things about all the standing Emma is doing is that it's further to fall! When she fell and bumped her head tonight I was having a hard time stopping her tears but the musical duck(!) did the trick!! She wouldn't go near it a month ago!

Then when Scott was playing with her he noticed some movements when the duck played - she was DANCING!!! Well I just grabbed the camera, it was too good to miss! And of course I'm sharing it with you...

Today was the first Saturday that Scott has not been away or working in a very long time. We took advantage by sleeping in until 9am! Emma got up at 5am of course, despite a late night, but she joined us right away and slept through.

When Emma woke up she was in good spirits and woke us with her chatting! We chilled there for a bit and Emma rolled from side to side over and over having us take it in turns to kiss her face!!

When we did get up we headed out for grocery shopping. While we were out I left Emma with Scott in one store we were carrying Emma around. When I got back this is what I found...

The cart is extra large - see the four leg holes! She's not that small!

Her first time sitting in the cart!! She is becoming such a big girl and totally loved it! She did not fall over once, and was unable to lick the handle - yes, she tried!! I guess I need to get one of those cart covers!!

I just wanted to explain that when I posted Emma's wish list last week, it was definitely not a request for gifts! I intended to make it easy for those who had expressed a desire to get Emma a gift - I know I don't like to give gifts that aren't suitable! Anyway, I took it down and I hope no-one was offended!

Parade

Today we left Emma with Grandma Ellen and headed downtown for the Phillies victory parade. It was quite an experience for someone who has never been to a big parade (unless you include Disney World!) and limited sporting events.

There have been estimate of over 2 million people hitting the streets of the city, so it is no surprise that we waited for over an hour to catch the train, only to see 3 fly by without stopping. We gave up and caught the trolley, and then the subway, (which also turned out to be necessary for the trip home!)

Jeremy gets the best seat in the crowd!

Union workers get a great view, and get paid!!

Kimberly checks things through the bins, while Sammy gets shoulder time!

Cleaning windows has it's advantages.

We were so thrilled to stand in front of city hall, about 15 feet from the edge of the parade route. There was bleachers in front of us, but the parade was on truck beds so we could see the people.

Passing the time...

An office worker misuses his Post-It notes and the crowd goes wild...

I found out later, that the video of the players as they passed was angled to low (at the end of my fully-extended arm!) and I didn't get any of them!!But we saw them in person.

It really is astonishing the adulation that these players were experiencing. I forget where but last week I heard someone say that in Florida and LA sport is something for when the beach is closed, but in Philly it is a religion. They were spot on. (I wonder how different our city would be if the same energy was devoted to God!)

Check out the aftermath...

The trek home was crazy, with 3 small kids in tow I'm amazed we were all still smiling. Tired, but smiling! Maybe next year Emma will get to go to a parade like it!

More fun

Yesterday afternoon we braved the cold to go and watch Kimberly play field hockey. It was sunny, but with a cold wind. We had to leave before the end of the game - Emma's face was cold and her nose started running!! But Kimberly and her team were doing great!

In the evening Emma was entertaining us again with her love of sharing. Her favorite game now is to hand you a toy or block, over and over! Sometimes she has fun by not letting go of it, laughing when you "struggle" to get it from her!

We are enjoying this increased interactivity, but we still look at her sleeping peacefully at night and marvel at our blessings.

Here she has fun with "the hawk"...

Video-tastic

I simply had to get some video of Emma playing with Scott tonight, she was sooo cute!!

Quite literally the hardest we've ever heard her laugh!

Sleep Study

Last night we all stayed over at the hospital for Emma's sleep study. The point of the study is to closely monitor her breathing while asleep to see if/how often she stops breathing. The obstructive sleep apnea is caused by her floppy windpipe and also the disproportionate size of her tongue (it's smaller than most babies, but her jaw is even smaller still!)

We took two cars so Scott could leave earlier for work in the morning. As we drove down, we were racing against the clock to be on time, but still had time to make faces at each other. Then it struck me, I think we have managed to have fun throughout this prolonged hospital experience, and what a blessing that is.

As you can see here, Emma has fun too, while we waited for the technician..

Emma was very good, allowing the tech to stick all the probes to her head and body. As you may know, Emma loves wires so to keep her busy the tech gave her a set of wires she could play with and she left the others alone!




When it came time to put the canula in her nose she protested and tried to pull it out a few times during the night, but it was 8pm and she was tired! After I rocked her for a couple of minutes she was a sleep and only woke briefly a couple of times all night.


In the morning the technician had to pull off all the probes she had stuck on the night before! Emma did not like that and after was covered in sticky patches!! I brought her home at 6am and put her straight in the bath. Thankfully she took a nap then so I could shower and ge tmy head down for an hour too.

We will get the results in 1-2 weeks!

Family Time

After dinner (which was homemade shrimp & broccoli alfredo - that's right!!) Scott turned off the TV. Both Emma and I were confused, but he told us that we were going to have some family time.

It turned out to be awesome. Scott and I sat down to play with Emma, who didn't know which way to turn, spoilt for choice! She started her favorite game of making you pretend to bite off her finger. For at least 10 minutes she went from Scott to me and back and forth!! We played for about a half hour (that's a long time to amuse a baby!!) and then it was bath time.

Emma is so cute in the bath tub so I just had to get some pics!

Wanted: Wisdom

It is great to have Scott home again. I waited up and he found me asleep on the armchair at midnight!

He was very excited to see Emma and he kept sneaking in to see her! (I warned him not to wake her!!) When she did wake up at 4am he kindly went in for me, and she apparently seemed more upset when she saw him! That didn't last long and she was soon laughing away!

I was excited to show him the finished bedroom and he loved it! Thank goodness, I worked hard all week to get it ready. (i'm not posting pictures, but I will say it has a very relaxing color pallette and decor.

After a very long day on Saturday (we stayed up to watch the Phillies until 2am!) we spent the afternoon at home. I took a nap so that I could last for the next Phillies game! They won again, and hopefully will clinch the series tonight!!

We weren't up too late, but when Emma got me up at 2am and again at 3am it was tough. I had a terrible headache, so much so that when she wouldn't stop crying ( I eliminated the problems I could!) I myself started crying. I woke Scott up and he took over. I was feeling better by 4.30am and once again cut off the night feed as it seems to be giving Emma extreme gas. She went back to sleep until 5.45am - perfect!

As you know, we're adding a powder to her milk to add calories, however this slows down the digestion process, which increases the build up of gas in her belly. We also add vitamins to the milk, which has the same effect, compounding the problem.

The added complication for Emma comes from the gastroschisis. According to her doctor it causes "stupid bowel", which is sensitive to the various things we try.

So far we've done the following to increase the calories:
Add formula = diarrhea
Add fat (microlipids) = increased weight, slowed gastric emptying, vomiting
Increased volume = vomiting
Add carbs (polycal) = increased gas, slowed emptying

As you can see, by process of elimination, no-one is really sure what to do, but we have to do something. Emma lost weight at the last weigh in, and since her surgery is likely burning even more calories just trying to breath at night. Sleep is necessary for growth, but is actually making that hardes for Emma!

I admit I've been placing my faith in the doctors for the answer, but that's crazy! Please join me in praying for a solution and wisdom for the doctors. They asked me to add the polycal for at least a week, and then I am going to suggest revisiting the volume issue.

At her age Emma would normally be receiving additional nutrition from solid food, but that is slow going! As for changing from my milk, I don't think that's desired because of all the other benefits of human milk.

Sigh of Relief

Let me just preface this by saying that I, in no way, take credit for the triumphs of today!! I take it all as an answer to prayer. And now for our day...

Emma and I got up at 4.45am and after all we needed to do (finish packing, pump, dress etc) we left the house at 6am! That was a bit later than I hoped but still OK.

We arrived at the airport and I realized I didn't know which terminal or flight number!! So unlike me. It was fine though, and we went straight to the right terminal.

When you take a "lap-child" on Southwest you have to do a full check-in, boo! However, there was no line and the lady gave us our passes for the flight home, YAY!!

Imagine if you will, I had Emma in the stroller and the biggest backpack you can imagine. Approaching the security check I have to do the following:
Take off my shoes
Empty pockets
Take out liquids and milk
Pick up Emma
Fold stroller

Put everything (except Emma) on the conveyor belt!!

And I did, without dropping anything or anyone! Triumph!

On the other side I pay $2.29 for a bottle of water. (Is it me, or should they have to sell it cheap as they won't let you bring it through!) I also bought some crackers, but when I took a bite on the plane I realized it would need to be washed down. Well guess what, you can't pee on a plane if you have a baby with you!! I tried hard not to drink a thing!

Anyway, we ended up sitting next to a couple with a baby at the gate. The mom is a respitory therapist and was sitting behind us on the plane. Something so comforting about having a professional nearby when you're alone with a baby with airway issues!

We boarded the plane and to my shock there were two seats right at the front (extra leg room). We sat down and the guy on the aisle seat was very big, so anyone who sat in the middle would have been squashed between him and a baby. No one did! Woohoo!

There was so much space on the floor I was able to change her diaper (she pooped right after take-off) and even laid her down when she fell asleep!!

We landed after a smooth flight, grabbed a Big Mac and coke [with caffeine, for me] and headed to the hotel. When we arrived I saw a couple of the other families there to see the therapist. One lady I knew from the conference and she offered to watch Emma while I pumped in the bathroom! Sweet!

When we got in to see the therapist she was pleased with Emma's progress and said we don't have to brush her hands anymore, but keep doing her face. I think we might have been doing it too fast, but it is hard to take your time with a fidgety baby!! She won't be back for 3 months, so I guess we'll keep on with that. She did explain a little more to me and said she'd send me details so I'll share that with you later.

Afterward I picked up another coke (sooo tired!!) and got the shuttle back to the airport! Remember that I had the boarding passes - just as well, we were late out and had less than an hour before our flight. Awesome!

I had to pump once more so we headed for the bathroom. I don't know how better to tell you what a good girl Emma is other than to say she sat in her stroller, in the disabled cubicle with me for a good 10 minutes without so much as a peep! And she really had not slept much all day.

I quick grabbed a bag of chips and a cookie (time people! nutrition phooey!) and headed for the plane. This time most people got on before us so I was nervous. Yet, there it was, a front seat next to a woman and small boy! They were cool with us sitting there.

And now for the biggest success of the day - I fed Emma... on the plane... while she was asleep in my arms... by myself. I thank you!!

The little boy next to us was 3 years old and kept saying how cute Emma is and she reminds him of his baby brother at home. He even kept kissing her feet!

We landed about 15 minutes early and got home at 6pm. I gave Emma a bath and put her to bed. I am now just waiting for Scott to get home at last.

There is one last thing that you know has to be God because I can't quite believe it myself. You may have caught it earlier! I put Emma on the floor in a public place. On the plane and in the hotel lobby. She was on a little blanket most of the time, but she was also reaching out for things! I also gave back to her toys that were dropped on the floor (gasp!).

That is huge for me. I don't anticipate doing it every day, but when you are by yourself you have to pick your battles!

I don't think I would have been able to handle today if I had not had this week by myself. I found out that I can do whatever I need to do. That said, I don't know if I'll do it again!!

I read an interesting devotional today talking about discouragement. Often when we pray we may not get an immediate answer or response (that we recognize) and that can make us think God won't answer us.

The delay may be a test of patience, which I can say first-hand God tests over and over again! The important point though is that God doesn't test our patience to see how patient we are. He does it to SHOW US how patient we are! Isn't that that the truth!!!

I think that's the case with many different abilities he has given us. Often our desire to forgive is challenged by a big hurt, or our willingness to experience something new or challenging is tested by an unexpected situation.

I used to be incredibly independent. I lived alone for a long time and liked to try and do stuff for myself. When Scott and I started dating I would often try and pay for myself, use public transport (more reliable than him in the early days!!) and generally do for myself. since we got married I increasingly enjoyed Scott's chivalry and willingness to do things for me. To the point where he's gone from commenting on my independence to joking about my neediness. (FYI, catching bugs is something I will ALWAYS request assistance with. From ANYONE!!)

With Scott heading away for 9 days I think we were all a little worried about how well I would cope with Emma by myself. I am thankful, now (!), of the opportunity to see that I can cope and actually enjoy getting Emma all to myself.

Don't get me wrong, I couldn't wait for Scott to come back and I will be happy if he doesn't leave again!! I also am sure that it was my faith in God (and His faithfulness in providing) that gave me the patience, energy and joy to deal with the new situation. After all, that's what he's been doing all year!

Pray for me

Tomorrow Emma and I are flying to Orlando for a body brushing session - without Scott!! We decided to give it a go whether he was here or not. Paying out for two airfares is not something we can do, so this is really a big test.

The challenge really isn't Emma (I don't think), no, it's actually taking Emma, all her supplies (baby stuff, milk, suction machine) and all mine (breast pump kit). To do it I am putting Emma in a small stroller and taking a back pack and the suction machine bag.

As you can see from this picture, it is a very small stroller and she seemed to like it the one time I put her in it!


We will only be in Orlando for a couple of hours, flying more than we are on the ground!! The appointment is only 30-45 minutes! I have tried to figure a schedule of feeding and pumping that could work!

When all is said and done, we are in God's hands. Emma's temperament, airport delays (rain expected!) and my own patience and energy are huge variables. And that is where you come in. Please keep us in your prayers, for safety as much as for a good day. Not to mention, we want a good report from the brushing therapist!!

Absence makes the heart grow fonder

Scott left for Guatemala on October 17 at 12:10am (to return late on October 25). The days preceding his departure were an emotional roller coaster for a couple of reasons.

Firstly, when he went to Africa for 2 weeks, a few months before we got married I had unexpectedly missed him terribly. We weren't living together, and I was working, doing my usual things, but it was really tough.

Being home all day, with a beautiful (but exhausting) baby I was very fearful of missing him emotionally, but also practically. Most days I am ready to tear my hair out by 6pm when he gets home, so I worried (and prayed) about how I would handle 9 days by myself.

I am certain that my prayers were answered with an incredible patience. Maybe it's grown from all the trials I have faced, or maybe God had to pour an extra large dose into me, but when I would normally be getting frazzled and frustrated I have been calm and consistent!

Emma and I have settled into a routine that allows us both to get plenty of sleep and get out of the house! Yay!

Secondly, for some reason the trip to a foreign country, far away and unknown elicits a fear of something terrible (like death) occurring. It's different than if it were a vacation as he is on a mission, and the Bible is clear that there is an enemy working against us when we carry out God's will. Kind of like a Christian James Bond, working for the Father, and the devil is SPECTRE!! (Sorry, I'm a huge Bond fan!)

Driving on the highway is statistically far more dangerous than flying, so you might call these fears irrational! None the less my mind created many scenarios that had unhappy outcomes.

The night before Scott left we had dinner together (Outback - yum!) and we shared our concerns (yes, he had them too!). We laughed about it, but responsible parents that we are we also touched on big stuff.

I also shared with Scott how these feelings had been affecting how I felt about the daily issues we face. Wet towels and dirty dishes are insignificant when the one you love is about to risk his life to serve the Lord. Additionally, each morning as I watched him leave for work the same thoughts ran through my head and heart.

And that's where I get confused. Why, oh why, can I not keep that same perspective every day? Now I don't mean living in fear of death or separation. I'm referring to allowing love and life to eclipse those petty annoyances or silly squabbles?

None of us know how long we have and each day we need to let those we love know how much they really mean to us, and remind ourselves! I urge you (as I myself plan to do) when your significant other winds you up, before you react, think about if they weren't there for some reason. Maybe we'll all have less stress and much more joy?!

As I write this Scott has been gone for 3 days, with 6 to go. I am pleased that we are coping with our daily grind, but I'm certain that it is the hope of having Scott home again soon and the joy he brings, that is a big help. Not looking at what we are missing today, but fixing our eyes on the future, of being reunited with him.

Mmm, that sounds like a perfect word picture for looking ahead to when Jesus returns! Funny that.

I stayed up to watch the Phillies win last night, getting to bed about 1am! (I forgot to brush her earlier so I had to do that before retiring!!) Then Emma got up about 4am (she went to bed at 7.30pm!) and I ended up bringing her in with me at 5am.

However, she was awake! After she pulled at my nose and hit my face a few times I conceded defeat and got up with her! 6.45am was naptime, and that lasted until 8.30am. (Are you keeping track - that is less than 5 hours sleep!!)

No comment.

This morning we went to visit a friend of mine who has two kids, the youngest being 15 months. It was the closest thing to being a play-date and as you can see, little AJ was enjoying playing with Emma!


Phillies play again tonight, and yes I will be watching! Well, what's the chances they'll make the world series again anytime soon!!

Wisdom in peace

Some of you are familiar with the question "What would Jesus do?" which is always good to ask when faced with a tough decision. I would like to suggest also asking "What would Jesus say?"

Sometimes when we have a problem with someone we talk to everyone about it but the person in question. Those we turn to may not be objective, so rather than asking someone you know will take your side, and likely escalate the issue, why not stop and ask what Jesus would say if you asked Him? (That's a prayer by the way, and one I have always had answered right away!!)

How to Resolve Conflict with Your Spouse (Part 3)

by Rick Warren

Wisdom … is peace-loving and courteous. It allows discussion and is willing to yield to others … James 3:17 (LB)

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If you’re going to pull together when you’re pulled apart, you have to:

Concentrate on reconciliation, not resolution. Reconciliation means to re-establish the relationship; resolution means to resolve every issue by coming to agreement on everything.

That’s simply not going to happen. I don’t care if you both love the Lord and are both deeply in love with each other, there are some things you’ll never agree on because God has wired each of us differently.

But you can disagree without being disagreeable. That’s called wisdom. The Bible says in James 3, “Wisdom … is peace-loving and courteous. It allows discussion and it is willing to yield to others.”

The Bible says it’s wise to compromise. You can have unity without uniformity. You can walk hand-in-hand without seeing eye-to-eye. You can have reconciliation without resolution of every issue.

Some of you are worn out from the conflict in your marriage. You want to throw in the towel. Don’t do it! It is more rewarding to resolve a conflict than to dissolve a relationship.

Let me close with a couple of suggestions:

1. Get help. Many marriages are miserable, and they go year after year with the same old problems because the couple doesn’t seek professional help. Don’t go to just anybody; get a godly counselor who bases his/her practice on God’s Word.

2. Let God help. The other thing you need to do is get help from God. You can’t do this on your own. I’ve seen these steps work, but you need Christ’s power to work them.

Many marriage conflicts could be solved overnight if both the husband and wife would kneel before Jesus and say, “We humble ourselves and humbly ask you to make this thing work. We submit our egos to you and our hurts to you. Jesus, do what only you can do.”

GO PHILLIES!!!!

The Phillies are number 1, baby!!

Firsts

Emma's all about the progress this week!

Yesterday she was determined to spend the whole day standing at the ottoman (the exersaucer won't cut it now!), and as you can see here, she's even getting the feet going!

Before she would only move her feet if you lifted her entire arm!

Then today, when her therapist arrived, Emma rolled from her back to her belly. It's not the first time ever, but it is the first time since she learned to purposefully roll onto her belly. When she was a little baby she rolled both ways but it was more by accident!

Then as she was standing at the ottoman again, and I was not paying attention she did the splits!! She landed on her butt - huge progress as prior to this she would always fall back and smack her head on the floor! Most amusing was she seemed surprised, not concerned!


And finally, here's a little clip of how Emma finds amusement in all things...

Harmonious living

I think humility is one of the most overlooked, yet desirable traits in a person. I can't claim to be especially humble, and while being a parent helps teach you put others first, I also know how important it is in marriage. Thankfully Scott is one of the most humble people I know!!

How to Resolve Conflict with Your Spouse (Part 2)
by Rick Warren

Live together in harmony, live together in love, as though you had only one mind and one spirit between you … in humility think more of each other than you do of yourselves. Philippians 2:3-4 (PH)

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If you’re going to pull together when you’re pulled apart, you have to:

Convene a peace conference. Conflict does not resolve itself. It must be dealt with intentionally. Conflict gets worse when you leave it alone. Jesus says don’t ignore it. Deal with the issue while you can. If you’ve got something wrong with somebody or they’ve got something wrong with you, God says you go to them.

When? At once. Postponed conflict only gets worse. Another verse in the Bible says, “Don’t let the sun go down on your anger” (Ephesians 4:26 HCSB). I think that means 24 hours would be the maximum amount of time you should let something go unresolved. You need to settle it as soon as possible, before it festers and turns into bitterness.

Consider my mate’s perspective. I can’t just look at my own viewpoint, my own situation; I have to look at your viewpoint too. This is very difficult because it’s not natural. It requires an intentional shift where I have to change my focus from looking at my needs to looking at your needs. It takes God to do that.

When you understand where people are coming from, it’s so much easier. The better you understand your mate, the less conflict you’re likely to have with him or her.

How do you learn to understand your spouse? Listen. Listen more than you talk. This again is not easy for many of us. It’s not easy for me. Some of us get so anxious to make our point, to tell our side, to defend ourselves that we don’t even stop to listen to the other person’s point of view or what they are saying.

You are most like Christ when you ask, “What are her/his needs and how can I meet them?” When you’re angry, you’re preoccupied with yourself. But when you’re like Christ, you look to each other’s interests and not merely your own. One of the most powerful peacemaking statements you can say to your husband/wife is, “I’m sorry. I was only thinking of myself.”

Working

After some words of "encouragement" from my mum I am trying to give Emma oral feeds before she gets her tube feeds at breakfast, lunch and dinner. So far it's worked out fine and it really only takes a few minutes.

I think sometimes, with anything, it's the number of tasks that can overwhelm us, more than the complexity of each one. It's similar to how I choose a line in the supermarket! One person with a large quantity will go through quicker than a few people with small amounts. Why? Because it's starting and finishing things that add time, when you have a big task all the same you can get in a rhythm.

Emma's doctors have put her feeds back down, not because she wasn't tolerating them, but because she is now waking up super early and there just aren't enough hours to get in the overnight. Because her stomach empties so slow we can't just increase the other feeds - she throws up. Therefore they are sending me this powder which adds carbs to the milk. I'm hopeful she does not have the same gaseous reaction to carbs as her daddy!!

That's right, I've been getting up at 4.30 each morning and barely convincing her to stay put until 5.30am when I can achieve some level of consciousness!! I don't know why she's chosen that time, regardless of her bedtime, but I may have to put her to bed later so she sleeps in more.

Oh well, enough lamenting! We are having lots of fun together and she is fun to watch amusing herself!!

Conflict resolution, we all need!!

I received the following devotional recently, one of a 3 part message. It focuses on married couples, and I have found it too be true - on those rare occasions I think before I speak!! I wanted to share it because, Christian or not, these are great ways to handle conflict with spouses, sibling or anyone!

I hope you find it useful.

How to Resolve Conflict with Your Spouse (Part 1)
by Rick Warren

You quarrel and fight. You do not have, because you do not ask God. James 4:2 (NIV)

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Sometimes the biggest conflicts in marriage are over the most trivial issues. One of the silliest fights Kay and I ever had was over bath soap.

If you’re going to pull together when you’re pulled apart, you have to:

Call on God for help. Pray about it. Before you go to your spouse about the problem, discuss it with God. This may solve the problem right there. Practice what I call “ventilating vertically.” Many of you are very good at ventilating horizontally, but ventilating vertically is when you come to God and say, “Here’s how I feel,” and you just lay it out.

James 4:2 teaches, “You quarrel and fight. You do not have because you do not ask God” (NIV). Conflict often occurs when we expect other people to meet needs that only God himself can meet in our lives.

Confess your part of the conflict. Before I start attacking and blaming, I need to do a frank evaluation and ask, “How much of this conflict is my fault? I need to do an honest checkup and admit my part. When you’re wrong, admit it. And when you’re right, shut up!

Be honest. Matthew 7:3-5, Jesus said, “Why do you look at the speck in another’s eye and pay no attention to the log in your own eye? … First take the log out of your own eye, and then you will be able to see clearly” (GNT).

I need to ask, “Am I being unrealistic? Am I being insensitive? Am I being overly sensitive? Am I being too demanding? Am I being ungrateful?”

Tomorrow we’ll look at two more steps to resolving conflict with your spouse.

Feeding Time?

I don't know if I mentioned this, but Emma's speech therapist, Brooke, was really pleased with her on Thursday. Brook is not only here to work on verbal communication, but all aspects of oral motor skills, which includes feeding.

We gave Emma some small spoons of apple sauce, which she seems to like alot and Brooke said she was doing great considering she is now able to move the tongue like never before! She still ended up pushing it out of her mouth, but it will take some time to get the whole process down.

My part in this is that I need to feed her 4 spoons dipped in food as often as I can. The more often, the faster she should learn. I also have massage and sensory exercises to do with her, like putting different textures on her face.

However, for some reason I can not seem to find the time. Emma is fed by g-tube every 4 hours. I can't feed her orally for a half to an hour after as I don't want her to gag and throw up, leaving 3 hours. In that time I have to pump, eat and either run errands or put Emma down for a nap. I also have the brushing to do and of course, play time to encourage those motor skills. When all that is done, it's time to feed her again!

I don't think it would be an exaggeration to say I am organized and motivated, yet completing these things on a regular basis continues to allude me. I would appreciate your prayers in this matter. I don't want to choose between crawling and eating, but I know that eating is a newcomer that will have to fight for it's rightful place!

Emma has been doing really well this week. She has been sleeping well at night and taking naps like a pro. The only tough part is that she is waking at 5am most days, no matter what time she goes to bed. It wouldn't be so bad if she didn't need a diaper change at 4am!

The increased volume at night is not going great. On Thursday night, somehow one of the two ports on her g-tube opened and all the milk going in the other port came out and soaked Emma and the bed. I am going to try 60ml per hour for 8 hours instead of 70ml ph for 7 hours to see if she has less gas.

I'm not sure I like getting up at 5.30am each day, but during the week the news is on, so I don't mind so much. Today (Saturday) it's too early, so I'm learning about fire tornadoes!

This weekend we are going to meet Emma's new baby cousin, Josiah. He arrived on Friday at 8lbs 8oz.

Medical Update

It's been a while since I had any real progress to give you on Emma's health, and though I am sure you all love reading about the minutiae of our lives, it won't hurt to let you know about the science-y stuff!!

Before I do, I'm adding a helpful glossary of terms, so you won't get lost in all the medical speak!!

GERD (Really really bad reflux disease!)
Abdominal surgery sites (Gastroschisis closure and G-tube)
Tracheal Malaysia (floppy windpipe)
Pharynx (space at the back of the throat behind the tongue)
Pulmonary (airway)

Today we had a 2 month follow-up with Emma's GERD doc. He also monitors her feeding, growth and abdominal surgery sites. It turns out she is only 17lbs 1 oz, which means her growth (i.e. weight gain) has slowed too much. They need to increase her calories, but I protested at increasing the volume during the day (don't want to go back to the vomiting!!) so we are adding more to the overnight feed. Sweet!

However, despite the weight issue, they were thrilled at how great she is doing and can see that with her increased activity she is bound to need more calories. She wouldn't stop climbing and turning in the room! They couldn't believe how well she is standing.

I asked about a noise Emma has been making lately, likely sharp intake of breath, only noisy. Also some dry coughing. I assumed this was due to reflux as she made the same noises in the NICU, and told him so! He corrected me and it is actually an airway issue. Likely brought about by the tongue occupying more of the pharynx since the surgery! Also linked to the tracheal malaysia. I will be onto her pulmonary doc about it!!

Emma's dietitian asked me how long I plan on breastfeeding for (6 months being the usual and 1 year often the maximum!). I explained that I have no desire to diet (if I wasn't b/f I would be well over 200lbs!!) so I will keep doing it as long as I can!! Apparently 2 years is a great goal! I don't know about that, but I have no reason to stop, especially as it has been linked to ear infection prevention amongst other benefits. I won't lie, it's a pain, but it's just part of our routine now and I can pretty much set the schedule.

We also visited with the team who took care of my pregnancy, in the new Special Delivery Unit. If Emma was born this year, we'd be actually in Children's hospital! Just from the reception I can tell it's very nice. I pray I never have to use it!!

Her mouth has healed up nicely, and we have a follow-up appointment in a few weeks. Her tongue makes an appearance every now and then, as she figures out how it works!! she's still drooling alot, but also teething I'm sure. The speech therapist is coming tomorrow and we are going to see how she handles some food.

The body brushing is going well. We are still brushing her face, and a couple of weeks ago started brushing across the palms of her hands. This new one is to help with the grasping reflex and I have already noted that Emma is now able to put things down intentionally, whereas before she would only drop it if she wanted something else or if you picked her up.

Emma is keen to try it herself - here she is undoubtedly copying what we do to her hands. Genius, I'm telling you!!!

I just found Emma's picture has been posted on the Moebius Syndrome Foundation website. You can see her, and many other people with Moebius by clicking here.

Cold Light of Day

You guessed it, Emma was up at 5.30am! Tired yet not wanting to sleep, I was able to get her back to bed until 7.30am.

This morning we played, Emma had a little snooze and then therapy. I showed the therapist the videos and of course Emma then rolled over herself, a bunch of times!! She was impressed and especially pleased with her attempts to crawl.

The therapist is as sure as I am that emma is really smart. She is able to get the shapes through the right holes in her shape-sorter, put blocks through the rings and various other surprising talents.

Napping is not one of them though! After 15 minutes this afternoon she was screaming her head off. It was enough time for me to assess our painting from last night, and discover that it all needs another coat of paint!

Right now, Emma is making noises into a cup, enjoying the echo. I just got myself a huge bowl of ice-cream. Comfort in the bottom of a bowl!!

It's either really late, or really early, depending on which continent you are on!! You might ask what am I doing writing right now? (You might not, but I'll tell you anyway!!)

Tonight was ear-marked to tackle the bulk of the painting in our bedroom. Scott decided that he would skip over-time to spend some extra time with his girls before his trip. After playing with Emma and a bite to eat we got to work. (Yes, Grandma saved the day again by coming to see Emma. Yes, I do have a great Mother-in-Law!)

Scott painted the ceiling before I joined him. We then tackled the baseboard and door trim. (We debated the merits of wall then trim and vice-versa, and went trim first!) Thankfully the floor was taped off and the walls unpainted, which meant I could help! I'm not good at 'coloring in the lines!' (Scott thinks I only like to paint walls because I was never allowed to do it as a child - aforementioned reason!)

I had decided to do an "accent wall" in a dark teal color, which turns out to be uncannily similar to the Philadelphia Eagles green - how many married men get to paint their bedrooms their team colors!! It also needed 3+ coats!

Scott handled the edges, of course and I waited patiently to go nuts with the roller and fill in the middle!

As you might have guessed, it was getting pretty late, Emma long since gone to bed (three nights of good sleeping so far! Yay Emma!). How on earth does one persuade tired, working hubby to keep going? It helps enormously if the Phillies have a playoff game (they won, yippee!) which starts at 8.30pm, and runs until 12.10am!! Coincidentally that was the exact time we got finished!

I also did a DQ run mid-evening and I myself had a bottle of full-fat Coke, which (in a very long-winded fashion) explains why I am still wide awake! Caffeine and sugar - the enemy of a good nights sleep.

The fun part of the bedroom project is that Scott won't get to see any finishing touches until he comes home as that is my distraction project while he is away! This is the other reason I can't sleep - soooo many ideas!!!

I also did something I thought I would NEVER ever do tonight. Let me set the background for this. Imagine if you will, as a child, we would often return home from visits to my grandparents on a Sunday afternoon. It was an 1.5 hour drive, during which my Dad would have the radio tuned into the football results. Torture.

I do not know why, but all sports radio broadcasts have the worst reception and the most grating feedback! I had since refused to allow such radio in my presence.

However, this very night, I actively changed the radio frequency to AM and picked up the Phillies game as I drove to Home Depot and DQ. I also verbally expressed disappointment at a failed catch by Shane Victorino. WHO AM I???!!!

One last thing - today Emma was 11 months old!! I can hardly believe it's come so soon, yet feel like it's been much longer!

And so ends the caffeine-induced ramblings of a soon-to-be-tired Mum!

Proof!

After a day trying to get Emma to roll, on camera, I finally got it!! I can show the therapist evidence!!

Emma slept through the night, back in her own crib in her bedroom last night. (If you remember she's been in with us after the surgery until she stabilized.) It was so great and she didn't wake up until 7am!

This week I want to get a real schedule going (I've failed miserably each time!), even though that includes my bed-time and getting up! Really, what kind of lazy bones am I if I can't get up! Maybe having the schedule will help us both get enough rest.

I'm also going to try and get out of the house at least once a day. The change of scene will be good for us both, and help me avoid cabin fever when Scott goes away. (Yeah, I'm really not looking forward to being alone for a week! I often don't see another adult than him for days as it is!)

P.S. Make sure you check out the pictures from yesterday, below!

Fall Festival Fun!!!

Dressed up as a lamb Emma, and I, headed to the church for the annual Fall Festival. For an October day, you don't expect it to be 75 degrees, but it was!! As the afternoon wore on, Emma gradually got undressed to be more comfortable!

No words required! Maybe one - CUTE!!!

"huh, what? No candy?"

"Mmm, which one shall I take?"

"Too hot to be a lamb!"

"Mine!"

I'm sure that there would be a moral outcry for using a child for personal gain, however the exception is candy!! Emma was my 'in' to get a nice little pile of candy!!

Wait for it...

Emma gave us all a thrill this evening as she started to lift her belly up to go backwards! She did it several times and we were able to catch it on video...

Last night Emma slept right through, with out coughing (though she did require a 3am diaper change!). I think we were both surprised and Scott slept in until 7am, his starting time at work!! I was able to get in a long shower AND dry my hair before Emma woke up at 8am!

I didn't sleep so well. I fell down the stairs last night and the worst hit area, my lower back is swollen and very tender. I have a giant bruise there now. Lovely.

Today was nice though, Emma had therapy (postponed from Tuesday), but I think her therapist thinks I'm lying about Emma rolling over! She just won't do it when therapists are hear - she doesn't need to if people are talking to her, she'd rather chat!

Then Pops and Grandma are over to play with her while we paint!

Better...

I'm pleased to say that Emma slept almost through the night (just one incidence requiring a cuddle), which meant that Scott slept better also. Me? No!! Every cough got me up, not that I was sleeping soundly anyway. I seemed to have a lot of thought running through my mind, and normally I would have got up and wrote them down but I really wanted to sleep!

She still has a cold, but the coughing is not as bad and I'm keeping the Tylenol flowing. I'm thankful she slept in the crib last night, but she was on a pillow and the vibrating mechanism was going - I think an insomniac could sleep in there!

It was all good though and we headed out early to run errands, back just after 9am. Emma fell asleep in the car, so we went right to bed when we got home!

Grandma came over to watch Emma in the afternoon while I did some work and made dinner (once a month is doable!!). Then she took an hour long nap before dinner (4pm dinner!)

Did I mention that Scott pulled her g-tube out? No, oh! (Just to show I'm not the only one!!)

This morning I took Emma to the pediatricians. Aside from the bad night and choking, she snorted out some bloody mucus this morning. The doc thinks I must have irritated it when I'd suctioned her. The drooling and runny nose are either a cold and/or teething. There is nothing we can do to ease it, other than Tylenol and pray that she learns to swallow her saliva soon.

Emma was also thrilled to get a flu shot in her thigh at the end of the visit! I think the drama wiped her out and she slept in the car ont he way home and for another 45 minutes in her seat at home!

Once she woke up she was a happy girl, playing on the rug. Typical - I canceled her therapy thinking she would not be up for it! Thankfully Maryanne can come Thursday morning instead.

After lunch at 12.30 she was really tired so I halted the laundry fight and took her up for a nap. When she's not well she wants to be cuddled, so I obliged and slept until 4pm! She stayed asleep until 5pm, so you know she's really not feeling good.

Scott was too tired to work on the painting (lack of sleep!) and I had not been able to get dinner ready (laundry sucked my time away!) so we got Chinese food and watched TV.

We are hoping to get more sleep tonight, though Scott may need to hit the sofa if it's the same as last night!

Cute as a lamb

Last night we tried Emma's costume on for Saturday's Fall Festival. It's supposed to be a lamb, but could be a bunny, depending on your perception. Anyhow, we just couldn't wait to share what is possibly the cutest thing we've ever seen (we are completely un-biased).

Here she is...

Seriously, there's nothing cuter!!

Bad night

When I was a kid, as often as I would clean my room (pretty regularly) I would rearrange the furniture! I'm not quite sure why, but I still like to do it. Unfortunately our furniture does not allow me to rearrange our bedroom, so Scott agreed to let me paint it - a cheap way to change a room.

Last night we moved into the guest room so we could take our time to prep and paint.

Of course last night Emma had a bad night and she ended up in the guest room with us!! She didn't actually desat, however she was waking up every 20 minutes coughing and crying. We had no option to bring her into our (queen size) bed so any of us could get sleep.

I was able to get her to sleep in the crib for a couple of hours before Scott had to get up for work.

I'm not sure what's wrong, but I think she has a cold. She's definitely not herself today. She normally looks all around when I carry her around the house, but today she's keeping her head on my shoulder.

You may recall that we were told that if she got a cold she may need hospital care. We are praying against that, but also for the energy to take care of her round the clock. Today we will likely spend the day in bed!

Back to reality

Emma hangs out in the kitchen with us!

The weekend marked the return to normalcy in our household! Saturday we had such a great day as a family. The photo shoot was lots of fun, and we headed over to a friends house to watch the baseball in the evening.

That night Emma was returned to her room (albeit in the travel crib!) for the night. She definitely sleeps better in the travel crib for some reason, but not as well as she does in our room. Any idea why? Anyhow, I got up 2/3 times in the night, so getting up on Sunday was tough!

Church was great and Emma was making many of us laugh. While other babies fuss or cry, she just chats! She has a way of saying "eh" that sounds like a question. She also waves to the people around us. Thankfully she did not distract PB!

We had the youth group crowd over to watch the football afterwards. Emma took a brief nap and then came down to check out the scene. After another short nap later she was up for the evening!

We've noticed that she is as playful as ever if not more so, and she has started sticking her tongue out as far as her lip.

She is still drooling constantly and while it doesn't bother me, she is having some trouble swallowing it all. We've had a few de-saturations over the weekend, often preceded by some throat-clearing noises. I'm just keeping an eye on it for now, we have an appointment with the pulmonary doctor after the sleep study.

Today we hit the road for some errands and I could not resist getting these from Target:

And now we are just hanging out at home. I was so excited though when Emma started playing peekaboo with me using the blanket she's laying on. She started pulling it up in front of her face and then dropping it!

Seize the day (incl pictures!)

Last night I went out with the youth group (I'm back!!) and left Scott with Emma. Jeremy came over with baby Aaron though so I'm sure they had a great time. In fact, they watched the event we were at, live on the internet!!

We went to Harvest Crusades in the city, a free, 3-night Christian event with rock bands and a great preacher. I saw Jeremy Camp live and he is without a doubt my favorite artist, and he did the song that really touched me when Emma was in the hospital, Let It Fade. YEAH!!

The preacher was Greg Laurie, a middle-aged guy from CA. His son who was a key part of the crusade died in a car crash this summer and they played a slideshow of his life. He was 33 years old and left behind a baby girl and wife.

Greg's message this weekend focuses on death, not something many wish to discuss, but the one thing that is faced by us all. He gave a great analogy of how many people do not have a great passion in life, or know what their purpose is. Do you? I know I used to be like that - it's like waiting in line for a ride at a theme park like Disney. You wait for an hour or more for a 2 minute ride, and then go line up for the next one!

So many are living life like that, just waiting for the weekend or next vacation or national holiday. I even find myself doing that sometimes, waiting for the next appointment, birthday etc. It's really not living.

And then it comes to an end, sooner or later. What happens then? Most people believe that if you're "basically a good person" it's off to heaven. However the Bible is clear that "for all have sinned and fall short of the glory of God," (Romans 3: 23). We've all broken one of God's laws (the ten commandments) at least once. A small white lie is still a lie!!

So, in some way, to get to heaven we must compensate for this action against God, to be forgiven and then enter heaven. Unfortunately, as much as you can't get toothpaste back in the tube, you can't erase your own sin. Nor can you do enough good to balance it out.

Thankfully you don't have to! "For God so loved the world that he gave his one and only Son, that whoever believes in him shall not perish but have eternal life. (John 3:16)

Jesus answered, "I am the way and the truth and the life. No one comes to the Father except through me. (John 14:6)

Jesus said to her, "I am the resurrection and the life. He who believes in me will live, even though he dies; and whoever lives and believes in me will never die. Do you believe this?" (John 11:25-26)

If you do truly believe that this is truth, with your heart, then your heart's desire will start to align with God's desire and purpose for your life. You don't have to be "pure" to receive forgiveness - it is once forgiven that we are made to be pure (in an ongoing process that is not complete until we reach heaven.)

With all the violence around us, accidents, pain and sadness, it is okay to want more. We were created to find joy and peace in God's love and it's available to us all, all the time. I suppose you just have to want it more than the occasional "happiness" that comes at the end of the long wait. But I challenge you, as someone who waited time and time again, is the ride ever really that good? Doesn't the thrill fade the second it's over?

If this stirs your heart at all, has just the slight ring of truth to it, I want to talk to you. If you are wondering how we have come through the last twelve months with hearts even more full of joy, peace and faith, then I want to talk to you. If you've known me for a long time then you know there is something different about me now and I want to explain!

You might not believe that there is a hell, or that Jesus was telling the truth. If you believe in god, but not the God of the Bible, what are you basing those beliefs on? Are you willing to stake your eternal destiny on your opinion?

On a different note, the story about Greg's son moved me. With Scott's upcoming trip I felt a jolt, looking at the pictures of the little girl with her Dad, now in heaven. What would I be able to show Emma if something similar happened to us?

We have some great pictures, but I wanted some REALLY great pictures of our family. When I suggested we go and get some done professionally Scott agreed, and here they are!!

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.