Vacation pictures!! OCNJ

Chocolate covered bacon

11" sea bass

Sea robin

Flounder

(All were too small to keep!)

Best friends

Last week Emma and I went to an event for tween girls (I can't believe we are at that stage already!) with one of my best friends and her daughter Abby.  They live in a different state (New Jersey) and we only see each other a few times a year, but we keep in touch on Facebook!

The girls have known each other longer than any other friends

And it's so sweet to see how they just get along even when it's been several months as it was here. (The top pic being 8 years ago though!!)

They had a blast hearing how the are God's masterpiece and great messages about modesty and inner beauty.  (Good for us moms too!)

Then today, a week later Em went to Abby's birthday party.

And Abby will hopefully be coming to Emma's birthday party!

The best friendships are not affected by time or distance!!

New day, new perspective

Trying to make the best of a bad situation (as usual)!!

And artistic ability is in overdrive!

He's finding the cool factor, and loves that we have to help him with everything. I'm thankful it's not his dominant hand for sure.

More hospital visits

Two days ahead of vacation and my baby decides to fracture his arm!

In the right picture, the bone above the elbow has a slight fracture which will require a full arm cast for 4 weeks.

He was a total trooper, not crying after it happened - which is why he continued at gymnastics for 2 hours after he did it!! When I went to collect him I saw how swollen it was and that he was not moving it, and we took him straight to the hospital.

He even slept (or pretended to) through the casting!

So, no more pool or swimming, no bike riding or running.  It's a shame school doesn't start for over a week as he can't really do anything fun poor baby.

No shame.

At the start of 2015 I joined weight watchers. I was done feeling sorry for myself, then angry at myself, and back and forth! The plan worked great because I surrendered to it, willing to deny my appetite to achieve my goal.

I lost 25lb in about 6 months and felt awesome. Then I got busy, and struggled to prioritize my health, and attend the meetings that had supported my loss.

And now I'm back where I started. But the CRAZY thing is I actually have a "little voice" telling me I shouldn't go back until I've lost some weight! It would be embarrassing, a failure to go back and admit I've struggled to do it by myself.

Ridiculous, right?

I have heard this same scenario from countless people about church! They can't go because they aren't living right, or know they'll have to let go of some things to be freed up.

You don't go to a doctor because you are healthy.
You don't go to Weight Watchers because you are thin and self-disciplined.
You don't go to church because you are perfect!!

We aren't meant to do life alone, and we sure don't need to! There's no magic button for weight loss, but there are many ways, and you will need support for the long haul.

There are not many ways to God's peace, just Jesus. But each day is an opportunity to take it all to him, and drop the burdens at his feet.

“Then Jesus said, “Come to me, all of you who are weary and carry heavy burdens, and I will give you rest. Take my yoke upon you. Let me teach you, because I am humble and gentle at heart, and you will find rest for your souls. For my yoke is easy to bear, and the burden I give you is light.””
Matthew 11:28-30 NLT

Time to man-up and take care of business.

And we wait, and pray, and wait some more.

3 week post-op check up and all is looking good. Em is thrilled to be cleared to eat her favorite foods and do anything!

While our hope remains wholly on God for "success" for the left side, it was great to hear the doctor say that it's not unusual for a muscle to need greater healing time before it starts working.

And so we wait, with joyful hearts for all that God has already done and all that he will do!

Field trip

Following Emmas one week check up on Tuesday, we popped over to see Scott at work.  

It's a 28 storey apartment building, with very high rent!

It's still a construction zone, so safety first!

Scott has an office in one of the studio apartments!

It feels a lot like a hotel!

I liked the kitchen tile!

Great views

This was the view from the 28th floor, of the soon to be tallest building in Philly, next to the current tallest building!

Took the kids with me to a clothes shop so I could look for a dress for a wedding.  The kids tried on some new duds, and Toby seemed to like it!

Hands and feet

The world seems like it's falling apart, but God is still on the move. He moves through you and I when we let him.

A few weeks ago Scott, on the way to lunch, was asked by a man on the street if he would buy him some food. Scott agreed and invited him to the deli. The guy called Scott "an angel".

They got to talking and he learned the guy was homeless, had no family having been a foster kid in Chicago, and had lost his non-union carpenter job several months before.

Before I knew it Scott had gone through his closet and found a bunch of clothes to give to the man, including the new socks he had got on his birthday!

Last weekend they met up and the guy had been offered a job outside the city, but he had no way to get there. Scott hooked him up, and off he went. He didn't hear from him again until yesterday.

He's been working, and is waiting for his first check so he can rent a room and get back on his feet.

Yes, I'm extremely proud of Scott, but I'm mostly excited about how this stranger, who was clinging to his faith in God, asking why him and trying to avoid hopelessness, received love and hope, from a good Samaritan.

Needless to say the guy is very thankful to Scott, who in his usual way just told him he's only giving what God has given to him!

Update

To fill you in, Scott and I took Emma in to see her surgeon on Tuesday.  Previously he had said that the left side just needed more PT and time.  The therapist had communicated with him after our session last Wednesday and he told us to come in on Tuesday (the only day he does appointments).

From our meeting I get the distinct impression he has done fewer of these procedures than I had thought, and certainly did not seem to know how to assess if the muscle had become disconnected. 

I explained what happened in therapy, I explained wht the other surgeon had said to me after the surgery, that if it disconnects, the cheek would drop, and then showed him photos that showed a change in the suspension of the corner of the mouth. 

He seemed to concur, and also thought he could feel the muscle hiding behind the cheekbone.

Thankfully he also felt that sooner was better for addressing it, and put us in for surgery on Monday!  The plan is, I believe, to open the incision on her cheek and see if they can locate the muscle and reattach it there. Since it's a small space (and I don't even want to think about how scarring might be worse), there's a chance they will still have to go back in behind her ear for more accessibility. 

Emma seemed quite perturbed about that - because she hated having the drainage tubes that pull excess fluid from the cheek out a tube into containers at the end of the tubes.  But also because her hair is now growing back in and she doesn't want to go through that again!  The Dr said he would not shave her hair again!

The good thing is we are only talking about one side of her face, and only part of the original procedure to be repeated.  That should hopefully make recovery markedly easier.

We are all very pragmatic about I - there's really no question that we need to try again, since the other side is moving so successfully.  Scott and I have a much better picture of what to expect and how to be prepared both at the hospital and at home.  My company didn't hesitate to let me take next week as a vacation, and I'm sure as I need to, work from home or take more for appointments.  Thankfully I have plenty of days left, if things are similar to last time.

It certainly isn't how we envisioned spending the bulk of the summer, but it's totally worth it and also great that she does not have school.  The expectation is that she would be able to restart therapy before our scheduled holiday at the end of August - and hopefully cleared to have lots of fun in the ocean!!

We'll be making the most of the next few days, getting Emma out and about before she spends a few weeks in recovery.

Please pray for the doctors to have wisdom and skill on Monday!  And for us to have the strength and energy to support Emma. 

Heatwave!!

What else do you do after dinner when it's this hot?!

Plan B

I So, we headed to our third therapy session tonight and though we are sharing the hour with another kid (nice at first, now we are just getting gipped for time!) I let the therapist know I wanted more answers on why the left side wasn't moving.

She did all the exercises with Emma and had to admit the left was pretty much lifeless.  Then we went to the computer for the electronic exercises and she had both kids do rest rates and then biting rates.  Emma's were both even.  

The sensors were placed near her lower jaw, so I asked what they were measuring and she said whatever moves there.  I suggested that since her jaw is very strong and she has no trouble chewing that it is picking up her massetter.

I asked her to move it to the temple area, which she said wouldn't pick up much since they moved the muscle.  Since I can feel the muscle contract with my fingers I knew she was wrong.

Sure enough the right side went from 22 up to 150 when Emma bites down.  On the left it went from 15 to 27.  (Small satisfaction in that victory, but a good example of how medical people are making this up as they go along, especially when it comes to Moebius.)

Since it was already 8pm and the end of her day we couldn't really talk but she said it's likely it detached.  She reminded me we know that is fairly common.  True, but facing a second surgery is not bringing me comfort!

The therapist is going to email our surgeons, the main one being out of the country!  

I don't know how to process this, and my heart is breaking that Emma might have to go through this again.  In the recess of my mind I believe the doctor told me that if this happened they would be able to go in through her mouth, not the scalp, which would presumably be a less difficult recovery.

So thankful for Scott's eternal perspective and strong faith right now.  He reminded me that this life is fleeting, and not our ultimate destination.  Whatever we endure here, we have new bodies awaiting us!  Temporary struggles outweighed by eternal glory.

Flying high!!

We've even had friends stop by just for a turn!!

Emma received a gift in the mail this week...

It was a medal for bravery and courage, from the little boy who appeared on The Doctors tv show, and had the surgery last year!
There was a card, and Emma made sure I saw the last comment...

 

The Moebius community is incredible, especially the network of moms.  There are 457 members of the Moebius Moms Facebook group, from all parts of the globe.  The group includes the founder of the foundation and other moms who have adult children with Moebius, to moms with brand new babies, or newly diagnosed children.

On Monday there was a post from a mom that said her baby boy had just been transferred to Children's Hospital of Philadelphia, and did anyone have any advice or info she should know.  Emma already had appointments at CHoP for Tuesday and Wednesday this week, and I immediately shard our doctors names, and said I would be happy to come and meet with her.

Unfortunately it didn't work out on the days I was there with Em, so I stopped in after work on Thursday.  I spent about two hours in the NICU with her and her little baby.  She shared the story of why they had been transferred from a less specialist hospital, and I shared some of Emma's stpry.  

It was strange to be back in the NICU after 8 years, just 5 beds away from Emma's, with a couple of the same nurses (loud and happy reunions!!).  The smells, the sounds, so familiar, I know they'll never leave me.

We talk often about the purpose of things that happen in our lives.  It's not difficult to see how Emma's syndrome might have a bigger purpose - she inspires so many people on a daily basis, she has changed our lives and our extended family, to have a sensitivity for special needs that would never have been there - and a passion to advocate, support and educate.  

For me especially I feel a burden in my heart to be there for other moms who are taking a path in life they never anticipated, and would never have chosen.  To help them find the hope and strength to look ahead, despite the fear and uncertainty, and see the joy and love that will still be there.

There is still a baby, needing to be loved, lead and launched!!

Phase 1 complete

Today was Emma's 4-week follow up with the surgeons.  This was the appointment when we would know if everything has healed right and Emma can resume normal diet (instead of eggs, mashed potato, macaroni and yoghurt!) and activities.  It was a big day for her as she has watched other people eat the things she loves for four weeks!

  

I was confident it would be fine, everything is healing well.  The scars on her cheeks are fading and her hair is growing back in.  Her mouth is still tight, she can open it about as wide as a toothbrush (without the bristles), but therapy that we start tomorrow will help with that.

I was able to get a great picture of Emma as we waited to see the doctors...

I also got a picture of her with the surgeons...

Then we headed over to the NICU to visit and saw some old friends

We didn't specifically go to visit the nurses.  I got tagged on a Facebook post yesterday that a new Moebius mom had just been transferred to chop and was looking for any tips.  Of course I wanted to go personally and encourage her.  Unfortunately she wasn't there until later, but we may stop in after therapy in the morning.

Sure enough, as promised we had pizza for dinner and Emma easily managed two slices!

The extended version...

Yesterday a kid we don't know told Emma she looks weird. She immediately told me, and just like a kid that falls and looks to mom to see if they should be hurt or laugh, I think she was stunned and upset, but was at a turning point.

My mom default is to neutralize the hurt - I asked her how many people had told her she looked beautiful earlier in the day! She said "tons." I suggested that she listen to those people and not the ignorant kid, and she agreed. (why do we ALWAYS listen to the few negative things we hear, instead of the good?!!  I can go back 30 years on negative comments, don't recall many positive ones recorded to my inner soundtrack.)

But, although she seemingly moved on, as if I had taken a physical blow for her, I absorbed the hurt on her behalf. I was shaken and frustrated, it took me a while to calm down. And I was not happy with the way I had left it - you always think of something better to say later on!!

I was waiting for another opportunity to address the mean comment without harping on it and it came at Dairy Queen as we all sat eating our ice-cream. It started when my Toby said to Em "don't tell mom and dad what I said to you on the playground", which means tell them! So Em told us "he said he loves me". HUGE deal because he only usually says he doesn't love her, which she gets sad about. When asked why he said it, it was "because she was sad at church earlier!"

Anyway, I said I'd thought about a good way for both of them to respond to someone in that situation (because it's not limited to Moebius kids!) - "I don't care what you think." It was actually my second suggestion, but the first was shot down for being too long!!

Emma then showed the character that sets her apart - she said "well, when I first saw myself after surgery, I thought I looked weird!"

We can't stop people from being mean or rude, but we can stop ourselves from living in anger, hurt and behind walls. If we can show people grace, it allows love and peace to reign in our heart and lives!

Emma's third week back at church today, and right before we leave, some kid tells Emma she looks weird.

Our church is small, it's family and so many adults have been loving on Emma, telling her (and me) how wonderful she looks. But of course, this one negative comment upsets her. I asked her how many people had told her how great she looks today and she said "tons". So I suggested that she listen to those comments first.

It's so hard. She has more of a smile than before, but currently looks no less "different" than before surgery, it's just a different kind of different, if that makes sense.

My heart was already heavy, patiently waiting for healing to finish, and therapy to kick in, wondering if we did the right thing - no, I'm not 100%, this was so right yet, and that makes me feel guilty.  I'm not sure how much my own insecurities are playing into my fears (a lot, right?) or if I'm just not able to be objective. 

I don't know what my expectations were, and we are only 4 weeks out from surgery, so I'm talking myself through this time, trusting God and trying to be strong.

i am second

Our church has a summer message series called "I am second."  There is a movement that shares the stories of many people.  Pastor Bob played this testimony today, and it's not easy to understand, but it is worth persevering.



"We throw away broken things, but God doesn't.  God use broken things."

Tomorrow is Tobys last day of school so all his work has been sent home.

Just read this in his journal...

Little sweetheart!!

Mini- vacation

What was supposed to be a quiet day was happily full!

Scott went in to work at 6am, as he usually does (an hour later than weekdays!), only to be home by 9am to get us and go to Tobys T-ball trophy ceremony then game!

Then it was back home, where Scott finished our other tree swing...

And tested it out!

We've all been swinging on it and it is really fun!

Toby and I headed to the pool, and Scott and Emma came up later.  Em is not supposed to go to the pool in case her face gets knocked.  However, despite it being 91f, there were hardly any people there.

At first Em was in the baby pool, where she played with a boy from her class

In the shade, as we know sun will make her scars stay red.

Not long after though the big pool was very quiet and partially shaded so she joined everyone else in there.

It's going to be very hard to keep her out of the sun all summer, and keep a hat on her to cover her scalp scars, and try to shade her face.  There are some options, like a tan tape that protects the skin, but I know it will look "weird"!  She'll have to go along with it if she wants in, and we may have to go later than we would usually, avoiding the peak sun.

When we came home (after getting an ice cream at Dairy Queen) we all went on the rope swing again!  

It felt like a mini vacation today, exactly what I needed!

Unexpected reaction

Yesterday morning Toby got himself grounded!  It was a long time coming - many days of dragging his feet on doing as he was told, or flat out ignoring it.  

The kids have a printed checklist with pictures of the things they have to do before we leave in the morning (basic stuff like eat, dress, brush teeth!).  Toby is the king of not getting up when he needs to and dilly-dallying around until I yell at him to move it!  As much as I am willing to yell, I hate doing it, especially in the little time I have with them before leaving for the day.

Anyway, I warned him on Wednesday a few times, that if he didn't pick up the pace he'd be grounded.  He got a break until Thursday morning, when I drew the line in the sand.

Being "grounded" is subjective in our house.  Neither kid gets an allowance, so it means withdrawal of a leisure activity.  For Emma, it would be taking her iPad or the TV.  For Toby it was keeping him inside the house (it is sunny in the 80s most days and he lives outside!), and not being allowed to play with his buddy from across the street.

Thursday afternoon Dillon came over to see if Toby could play.  Toby went to the door before I could and calmly told Dillon he was not allowed to play.  When asked why, he explained.  Then he picked up his Kindle and cuddled up on the couch with me!  

Victory!  He understood his mistake, and he accepted the consequence.  And he was not holding a grudge against me.  He still had his Kindle, or the TV, in fact any inside activity!  I was not trying to strip him of all his fun, just a simple consequence.

So today it was a clean slate, and after Emma brought him breakfast in bed (say what?!!) he got up and did fairly well to get out the door.  After school he had a playdate and all was well.

Until about 6:45pm.  We were all outside (Emma likes to sit on the bench swing when she can!), and all of a sudden I noticed Toby across the street, presumably looking for Dillon.  I asked Scott if he'd been asked for permission and he hadn't.  When Toby came back over we questioned him and he actually said "I didn't know who to ask!"  Um, you have two parents, both right here!!

Since he knows that he is not allowed to cross our street without letting us know first (it can be a busy street, but he is very good at crossing it, and we always have to know when he goes across), he was sent inside for the rest of the evening.  Well!  Full-on tantrum ensued.  I could here the screaming etc in the front yard.  Whenever I am tempted to feel guilty at these moments I remind myself that enduring this now might save him from an arrest warrant later!

He was fine by the time we all came in and the rest of the night went as usual.

When I snuggled up with him at bedtime he said "there's something I wanted to tell you yesterday and forgot."  Oh boy, my mind started to race, after all the drama!  Then he hit me with it, "your the best mommy."

Boom!  He doesn't usually say stuff like that, and I was not expecting it tonight.  But it was all I needed to hear to know that I'm doing ok!!

Keeping on

On Friday afternoon, about 45 minutes before school ended, I took Emma in to see her class.  At the start of the week she had been hesitant about going in, but after a few days, and lots of positive reinforcement, she was excited to see everyone. 

I had been nervous throughout the day, and texted her teacher to that effect, but she reassured me it would be fine.  I sent her a picture of Emma, so to avoid any shock, and thankfully she had shown the class!  When we arrived all the kids were happy to see her.  She got several hugs (which is really important - nothing worse than feeling like people don't even want to touch you), and they had all made cards again!  There were balloons, gifts and the white board had a ton of greetings.

Em's teacher brought her over to sit in the guest reader chair and then sat next to her, while the kids sat at Emma's feet on the rug!  Emma shared some things about her experience - mainly about peeing with a catheter, then a bed pan and then a commode!!  Then it was questions and comments from the kids. 

They had lots of good questions, and I did my best to answer the medical ones and the ones about her restrictions and recovery. 

Emma was excited to go back to school today.  We did her hair half up, which hides the shaved, scarred, are.  She picked out a nice outfit and was excited that because she will not be doing gym, she can wear sandals the rest of the school year!!  Initially she was going to stick to her normal routine, which involves joining a different class for an hour a day, but she requested today to stay with her class as her teacher offered.  She also opted to have lunch with her teacher because she "doesn't want people looking at her without her knowing."

When I picked her up (a little early so she doesn't get bumped in the rush when the bell goes!) she had had a good day!  She spent the whole day with her class, including recess and lunch which was spent in the classroom with two friends and her teacher!

She was a bit sad to not be able to enjoy popcorn with the class at snack time, however there have been days that she has turned down the snack based on health level!  She just happens to love popcorn!

The right side of her face is almost back to pre-op size, and the incision is pretty clear - time for scar cream!  The left side is still swollen, but the surgeon said it looks fine and just needs time (based on the photo I sent him last night!).

Parenting Challenges

Life is full of experiences that you need to learn from, or be doomed to repeat!  Couple recent examples...

Last night was a bit hectic, Em had a friend over after school finished, so we were home and I didn't get to the supermarket for much needed groceries.  When her friend got picked up Scott called to tell me what train he was on, as his car was at the mechanic and I was to pick him up and take him to the car.

It was already 6pm by the time we got all this done, and we decided to go to Chick Fil A for dinner.  We realized Em wouldn't be able to have her usual chicken nuggets and fries, but they have chicken noodle soup, and ice cream. 

Unfortunately their soup is a far cry from Campbell's condensed, and had celery and large pieces of real chicken in it - she couldn't eat it.  Understandably she got a bit upset.  Thankfully Scott got her a giant ice cream and she agreed to have tomato soup when we got home.  Poor girl!

Then this morning it was spirit day at school (the first Friday of the month) and the kids can get a soft pretzel for 25c.  Of course I forgot until we pulled in and I had only 23c in my wallet!  Toby was heart broken, and though I figured they'd probably be fine with that, you never know!  He hunted around the car and eventually found two pennies in his cup holder! 

We always tell the kids that pennies are worthless, but in this case they were very valuable!!  I guess you shouldn't take even the smallest thing for granted!

This afternoon Emma will go in to see her class and I'm praying that the kids are able to see her new smile and not worry about the distortion caused by the swelling, or her scalp incision. 

Progress Report

Things are progressing nicely.  Emma is pretty much pain free, and is only taking a muscle relaxer, with a little ibuprofen to help inflammation and take away the taste of the other medicine!  The swelling is still pretty significant, but I think it's going down slowly - tough to tell when I see her ever day.  The incision scars are healing very well and I think they will be pretty clear in a week.

After having the drains removed on Tuesday, life has been getting more normal.  She can sleep without worrying about pulling on the tube, change her clothes etc.  Emma is eating only very soft food like scrambled eggs, apple sauce and macaroni and cheese.  We are mashing up bananas too!  She loves the smoothies that I have for breakfast and lunch, so she gets one of those for breakfast, which she squirts in her mouth with a big syringe!

After our appointment on Tuesday we went to the movies to see the new Jungle Book.  We all used the bathroom before the movie and I noticed Emma glance in the mirror, but quickly look away.  It broke my heart because she has always loved to look at herself in the mirror - which I see as a sign of a good self-image, not vanity!

Mid-movie Toby needed to pee again, so we all went in to the bathroom.  As we rushed back out to get back to the movie a little girl came in, and I was nervous about how she would react to Emma's appearance.  She saw Em and said "Aww, she's so cute!"  This was definitely a God thing.  That's never happened before, and the timing was amazing!

I was not sure if Emma was going to be ok with going back to school before the swelling goes away, and there are only two weeks left after this week!  I asked her if she would at least go and visit her class because they all miss her and want to know how it went.  She was very reluctant and said she'd think about it.

Later that night we had to pick Toby up from gymnastics.  Emma's one coach had come to visit her at home on Monday, but the head coach was desperate to see her.  I told Em and she agreed to come in with me.  This was her first real public appearance, with kids around.  The coaches were amazing.  They were so excited for her and praised her new smile.  The coach explained to the other girls about her surgery and they were so kind.  On the way home Emma said she wanted to visit her class on Friday!

On Wednesday Emma spent the day with Nanna and Pops, and Sophia, so I could return to work.  She got a warm welcome and is really feeding off everyone's positivity.  She even told her therapist when she visited last night that she was going back to school on Monday!

Her teacher has been keeping tabs on how Emma is doing and letting me know the kids all miss her too.  I let her know about our visit, and some of my concerns for her full return and this was her reply:

"I'm so happy to hear that Emma will be visiting tomorrow!  I think the sooner she gets in, the easier it will be for her.  The kids in room 2 CANNOT wait to see her. 

Do you want us to make a big fuss about her return, or just keep it low-key- like a normal da?.  I want to make Emma as comfortable as possible, so let me know what you think is best.  I will talk to the class about being extra-sensitive.  They are such sweet kids and they all love Emma so much!

I would be happy to have lunch with Emma and a couple friends in the classroom if you think that would be better than eating in the cafeteria.  I'd be happy to keep her with me during gym class as well.
 
Let me know what you think is best.
We are so excited for Emma's return!"

We are so thankful to see god's perfect timing in all of this, from getting surgery scheduled as quickly as possible, to being before the summer and having an amazing class and teacher to support her return to school.

Last week Emma's principal called the house to see how she was doing.  Emma was rendered speechless - like the President was calling!  She also sent her a card this week and Emma was so thrilled.  I know this is not standard procedure - Emma has touched the hearts of all the people she comes in to contact with.  We are overwhelmed by all the love she is receiving back, but not surprised. 

It's so exciting to imagine the transformation over the next few months, and it is truly amazing to see her with a smile that I know is from her heart, not surgery!!

For I know the plans I have for you," declares the Lord, "plans to prosper you and not to harm you, plans to give you hope and a future.

Jeremiah 29:11