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.