Wedding bells!

What a whirlwind weekend, and we're only halfway through!!

Rehearsal and dinner was Friday night so  we left home about 1:30pm for the two hour drive!  

Emma was to be one of two flower girls, the other was the brides second cousin and is shy.  At the rehearsal Emma went right over and left Carsen little choice that they would be friends!  "Twin sisters" once they had there gowns on!!

In fact Carsen chose to sit with Emma at dinner instead of her family, which surprised them all!  It only just occurred to me that at no point did I mention Moebius all weekend!  Maybe Emily already had?!

The wedding was not until 4pm today so the kids had time to swim at the hotel!

Then Emma and I joined the bridesmaids around noon, where I did Emma's hair

And she held court, as usual

It was quite a long time for her to wait then until it was dressing time, but she did good!

Math and bible stories!!

Then Carsen arrived and they got changed and practiced!

I traded Emma for 3 week old Ruby, and left Emma with Ruth, Ruby's mom and a bridesmaid!  Scott helped me with Ruby

The bridal party had some pictures done outside. I got there for one...

Then it was off to the venue!

You might recognize the ring bearer - it's Nate, Pastor Bobs grandson.  The wedding was for Grant, Pastor Bob's other son and Emily.

It was a little chilly so I held the baby and Toby sat on Scott's lap, asleep!  He woke up right when it finished!

Then on to the reception...!

My adorable little companion!!

Toby likes the custom that when you bang on the glasses the newlyweds have to kiss!

And some dancing!!

It was about 8pm when Emma announced she was ready to leave!  We said our goodbyes and hit the road home!

A tapestry of fall colors as far as the eye can see!

Here's a little teaser for the wedding...

Just keep swimming!

This new schedule is working out great for our family.  We are all home at the same time, and have our weekends together.  Finally there are two parents to take the kids in different directions at the same time!

This weekend is going to be busy.  We have a friends wedding on Saturday, and Emma is going to be a flower girl.  She's already working on her walk, ahead of Friday's rehearsal!

Then on Sunday after church we will have Toby's 5th birthday party!  I can't believe my little baby is going to be 5 already.  Well, I can believe it when he is jumping all over the sofas or terrorizing Emma, but not when he curls up next to me to go to sleep or wants me to carry him!  He's the perfect balance of total testosterone and gentle, sweet love.  Yes, you can and should remind me of that when he's in warrior mode!

Toby chose to have a putt-putt (mini-golf) party, so hopefully the weather will hold off!  This will be the first party we have out-sourced and I'm kind of looking forward to the freedom it gives me to not be the host!  Or clean-up after!!

I'll take lots of pictures.

Always on the go, that's me!  It's doing wonders for my diet!!

Basement

Yesterday we reclaimed the basement as a playroom!  The huge rabbit pen was occupying prime real estate in the room, and it was not working for us.

Scott basically cut it in half, so it is now only 6'x4' (was 12'x4'), and occupies the space our bathroom will go if we ever get to put one in!

Before:

Now the space is wide open, and if we can get our hands on some sofas that will fit through the door, we will make it in to a family room!

Cute kids

Last night we got Toby to try his wedding outfit on...

And today Emma had photo day at school...

Speech

Emma does not currently receive speech therapy because we didn't know there was anything more that could be done to help her speech. Then we heard about the Talk Tools therapy at the Moebius conference. We want Emma to participate in the clinical trials to help get the therapy approved for wider use, even though it may mean she is in a control group rather than getting the Talk Tools therapy.

The trial involves 3 half hour sessions per week for 3 months. The therapist is not financially compensated, but will get training and tools to use. For us this is a challenge because we don't have a current therapist to help. So I put it out on Facebook for anyone who might be able to refer us. A friend of mine connected me to a therapist she had worked with. Turns out she lives really close, went to school with my husband (though they didn't hang in the same circles) and is also a Christian. She has two small children and works full-time at a school for the blind, so she's been mulling it over!

Last night she came over to meet Emma. I figured that would help, since she would see how cooperative and lovely Em is. I think it went well, she brought her kids and they all played together and we chatted a bit.

She was also star-struck to get a phone call from Sara about the study (therapist celebrity I guess!), which must've helped!

I'm thinking we will certainly see if we can get therapy with her following the trial so that she can do the Talk Tools with Emma on an ongoing basis.

Now I'm just waiting to see if we can get it going!

Party time!

Today we had the second of three Saturdays in a row where Emma has soccer in the morning and a birthday party in the afternoon!  Since Scott is free, we all go along and make it a family thing.

Todays party was in New Jersey, for Abby, the daughter of our good friends.  Abby was born just a couple of months before Emma, and they have been friends since they were little.  Here they are on Abby's first birthday!

 

Abby is quite the beautiful big girl now!

 Chrissie had planned an art party for Abby, and it involved painting, chalk drawings and even paint filled balloons that had darts thrown at them!  All outside of course.

 One of Chrissie's friends had brought their 3 week old baby, and they were kind enough to let Emma hold and feed him.  She was ecstatic!  She loves babies so much.

Before we went I had an idea for a great before and after with Chrissie and Joshua! (Yes, I can remember most of the pictures we've taken over the years, and have them organized by month!)

The first was from Emma's 2nd birthday, when Toby and Abby's brother Joshua were only a few weeks old...

 The second was today.  The boys are good buddies too, which is so great.  Chrissie and Brian had a third, but we aren't playing that game!

Funnily, Scott and Brian were wearing practically the same outfit (and beard), which was exactly what happened at Toby's party last year!

Good times, great friends.

Busy, Busy, Busy

I just realized I haven't posted in a week!  Hardly a surprise given that I am on the to constantly!  School, to work.  Then work to school.  My only free time is in the car!

After a shaky start last week, Toby is doing great at school.  Still shy at first, won't say hi to any kids but Kaylee, but is playing with them inside!

Emma is loving school and although she would like to ride the bus like many other kids, I think the hugs at drop off and pick up are important for both of us.  I do think she's missing going to Nanna's 3 times a week, and will do even more when homework starts!

We're all home by 4pm every day, which has been great.  The kids get to play with Daddy on the swingset, and usually 1-3 neighbors kids!  That gives me chance to make dinner and get any chores done.  It feels so "normal"!!

I'm back working out each day, I get up about 6:15am, after Scott has left for work, and do my work out in the living room.  The kids have a check list of all the things they have to do before we leave, like getting dressed, making their bed and tidying their room, eating breakfast and drinking some water - sounds simple, but I have to get myself ready and often forget what they need to do.  It's teaching them responsibility - well Emma!  Toby sleeps until about 8am and then it's flat out just to get out the door!

Our weekends have changed a lot.  Scott is not doing sidework any more and is home with us, which is so nice.  Em has soccer on Saturday mornings and Scott is coaching, being an involved dad.  For many weeks Emma has birthday parties on Saturday afternoons!  

We have a couple weddings coming up, including the one Emma will be a flower girl in.  It's going to be busy until mid-October, but it's good busy! 

I'll try and keep you posted with pictures and the like!

This is Toby and Kaylee on Monday.  This was totally un-staged!

Day two

Toby was drastically more confident heading in to school today.  He was not clingy (but did hold my hand) and when his friend Kaylee arrived he brightened up so much.  When the teacher came down the stairs, rather than push back toward me, I felt him move forward slightly.  

A quick kiss and hug, and he walked off with Kaylee (hand on the small of her back, guiding her like a gentleman, then following her up the stairs!).

Apparently he had a "great" time and was excited to pick three items to represent him for Show & Tell tomorrow: a transformer, his Pinewood Derby race trophy and a picture of Benjamin (the rabbit)!

I can't believe he will be 5 in just a few weeks!

Rollercoaster ride

Today was a real emotional roller-coaster.  It started out with me asking Emma a couple of questions about school that got answers I was not happy with.  From the sounds of it, she was being left out by other kids in the line before school and at recess. 

I don't expect 6 year olds to be hyper-sensitive to people being left out or mature enough to include those who are (most adults don't do it!).  So I wasn't as much mad at other kids, as just sad for Emma.  Of course, I couldn't show that!  She didn't seem overly concerned and me focusing on it would make it worse.

Then, after we dropped Emma at school, it was time to take Toby in for his first full day of school (2.5 hours anyway!).  He was doing great, really positive until it was time to get out of the car.  With each minute he seemed to pull back into himself.

When the teachers came down the stairs to get the kids he was trying hard to vanish in to the wall!  I got down on his level, talked with him and reassured him.  I walked with him to the teachers aide he liked from Monday.  She nicely led him away from me and up the stairs.

He walked slowly up the stairs, without turning back.  I saw him wipe his forearm across his face, but other than that nothing.  He was so brave, not crying, clinging or refusing to go.  I was really proud of him.

When Pops picked him up, he was smiling and said he had a good time.  He enjoyed playing on the playground with the other kids.  Hopefully tomorrow will be a little easier.

Tonight we had Curriculum night at Emma's school.  We gathered with the parents of all the kids in her class and met with the teacher. I had prepared another letter like last years and the Principal gave a great speech about embracing each others differences.  It was so much more heartfelt than last year, presumably because she now knows Emma personally.

Apparently one of the little girls from her class last year, also in this class "loves" Emma!  We will hopefully get the kids together - although Scott knew the parents from school and some of the history made us wary.  But then, people might say the same about Scott, not knowing he's been clean and sober for 13 years!

Also, the teacher reassured us that Emma is doing great and participating with all the other kids.  So, no need to worry at this time.

In conclusion, if adults acted the way we say we want our kids to act, this world would be so much better!!  That's what I've taken away from this!  After all, kids see what we do more than they hear what we say.

My baby

Toby went to his nursery school orientation today.  They have 3 grades: 3 yo, 4 yo, 5 yo.  He should be in the 4 yo, 3 day class but the teachers actually recommended he go into the 5 yo, 5 day class, (not whole days, just 2.5 hrs) where the kids could go to kindergarten but are either very close to the cut off age and held back or just need more time.  Since Toby already has some literacy skills and functions well with more scheduled stuff he got a spot.  

So, none of the kids from last year are in his new class.  I've been nervous about that because he only made one good friend all last year, he's so shy!  In his new class he does have one friend from church, Kaylee, who has been declaring her intent to marry Toby for a couple years!!

He has been a bit nervous, but he was a clingy wreck when we walked up today and all the other kids were running around together.  He would even let me take his picture alone...!

There was some administrative hiccups that had him in a different class that put me on edge, but Toby was painfully shy and it broke my heart.  I had to leave him with all the kids and teacher for a bit, to meet with all the parents and he was so upset.

The plan is that I will drop him off each day and race to work by 10.  I'm praying that he settles in quick or that might be tricky!  In fact I realized after I hadn't prayed with him beforehand, which had so helped Emma. Doh!

Anyway, his first real day is Wednesday, so we shall see!

Suburban life

When I tell you it was hot this weekend  I'm not exaggerating!  It was 3pm on Saturday and 93f outside.

Despite the heat, Emma had her first soccer practice that morning.  Scott and our neighbor Joe helped the coach while Emma, Lexi (lives 4 houses away) and the other 15 girls did some warm ups and had a "game"!

Emma and Lexi before practice!

Yes, they are the same age!  Birthdays only days apart actually!

Toby did pretty well.  I tried to kick the ball about with him but I'm not good with that!

Boredom eventually forced him to engage with the other kids.  I had not realized how much he relied on Emma for breaking the ice with kids!!

Emma did really well, and other than getting a ball in the face (!!) she was happy and we will be back again next Saturday.

Soccer star

Last year, after starting Kindergarten, Emma wanted to play soccer, but I had not known about it before she started the school so it was too late (and too overwhelming for me, if I'm honest!) so I vowed to let her do it next year.

Well, it's next year and tomorrow she starts soccer.  For the next two months, every Saturday morning at 10am she will play soccer with her team, one of four teams in her age group, and they all play each other.

We received the team list and I was thrilled to see Emma's friend from 4 houses away is on her team, as is the little girl that lives two doors down from Scott's mom and a few other girls she knows.

However, Emma is the least athletic kid I know so I've been unsure how she will manage with the action!  When I heard about a soccer clinic run by the high school senior girls, the night before her team starts, I signed her up!

It was a big step for me because I did not tell them anything about Emma's diagnosis or indicate she might be weaker or need special treatment.  You can imagine my nerves before we went.

Well, I needn't have been nervous at all.  First, she looked adorable (which is important for self confidence!) 

She went right over to the group already gathered and introduced herself!  (I did however mention that Kim is her aunt, knowing that would give her a little extra "in" - hey, a moms gotta do what a moms gotta do!)

She joined in with her group of girls, only coming over to us for water (it was almost 90f at 5pm and as humid as a steamroom) and kept commenting how sweaty she was.  But she did not say she was tired or ask to stop!

I met a couple of moms of other girls in her team and most of all, saw that she could run around for 90 minutes and be fine!  After a whole day of school no less!

Scott and I are so proud of our girl.  And now she can't use the old "I'm tired" excuse!!

Cake!

You know that phrase "have your cake and eat it"?  That's kind of how I feel right now!

This week Emma started first grade, which is full day school, and Monday Toby will start Pre-Kindergarten, which is 5 mornings a week.

I also started new work hours this week that will allow me to drop both kids at school personally, and then head to work.  I am able to leave work in time to pick Emma up from school myself each day. 

Many women face the decision of choosing work, or being home when the kids are.  For most, work is out of necessity rather than choice. 

Although I am not home to pick-up Toby from school (Pops will do that and then he'll stay with Nanna and Pops for a few hours until I come home), it is such a blessing that I will not miss one second of time with Emma!  When Toby goes to first grade in two years, both kids will have me home when they are.  They won't know the difference if I'm working or at home!

This is such a HUGE blessing (and I am so thankful to my bosses, and Scott's parents for giving me such incredible flexibility) because before we ever had kids Scott and I talked about wanting to be home for them, particularly after school (when they can get in to most trouble!).  It's not something that is possible for many people, while still bringing in an income. 

Dreams really do come true!!

First day, first grade!

Doctor Day

I'm not sure what happened last week, but I am way behind on updates!

Way back on August 21 we had a craniotomy facial day at Children's Hospital.  When I say "day" I am not exaggerating.  We arrived at 7:30am, Emma and I.  We headed straight into Ear, Nose &Throat, for a follow-up from 2 months ago.

When we went back in June Emma had some fluid in her ear, so the doctor wanted us back in 2 months to determine if we needed to put more tubes in.  Thankfully, the fluid drained by itself, and Emma was discharged, to return as needed.  Praying we don't see frequent ear infections over the winter!

Then we went across the hall to Cranial-Facial (plastic surgery).  Here a team of doctors follow patients with a range of cranial conditions.  In the waiting room it is hard not to be thankful that Emma did not have some of the other conditions.

In summary, we saw the following professionals in the hours between 9am-3pm:

Ophthalmology

Plastic surgeon

Orthodontics

Psychology

Audiology

Growth

Genetics

Plus a couple of nurses!

Audiology

Ophthalmology (they dilated her pupils and she couldn't read again until the next day!)

Emma was a trooper and only really complained when she was getting hungry (at lunch time!).  We got all of 25 minutes to grab lunch - and the cafeteria was a long walk too!  She had time to eat a couple of chicken fingers and fries, and we had to take the chocolate fudge cake with us!  (She earned every unhealthy calorie, and probably burned it off walking between all the offices!)

As for news, her plastic surgeon introduced a completely new suggestion.  It always concerns me when a doctor mentions something for the first time, after 7 years of appointments and various relevant questions, why has it never come up before?!

Anyway, he told me he wanted to have orthodontics put in a palate expander.  Emma has a narrow mouth and her palate arch is very high.  Combine that with a small, partially paralysed tongue, and no lip closure, you can see why that might be an issue!

The plan is to expand the top palate width, which will pull the roof of her mouth down and also allow her protipruding front teeth to pull back (with braces).  That in turn will let her top lip come down slightly more - wait, he said there was nothing we can do about the top lip?!  See what I mean!

Emma's bottom jaw is already recessed and will need a jaw distraction in the future, but we will also need to expand the bottom palate so the teeth continue to line up.

I was a little freaked out.  Firstly, never heard of this.  Secondly, how might this impact the therapy clinical trial we want to do.

I was actually posting a play by play on Facebook and was encouraged to see so many of my friends say they had a palate expander when they got braces!  That was great.

When I got home I contacted the therapist conducting the study she said it would exclude Emma from the study, but if we could postpone it for 6 months we'd be good.  We will postpone.

We met with a osychologist for the first time, since Emma is getting to that age where kids can be mean etc.  He was very impressed with her, and we discussed our strategy for raising awareness, supporting her and how we see things.  He said that we are doing everything right, which was so great to hear!  He did try to teach Emma that when she does have to tell people about her condition to keep her chin up and look them in the eye.  Not sure she got it as when we tried to practice she kept looking up at the ceiling!

So, we got done at 3 and headed upstairs for an unrelated appointment with the sleep doctor!  Scott was finishing work at that time and met us there.

This appointment was to discuss the restless leg syndrome that they diagnosed after her sleep study.  But we also wanted to discuss Emma's sleep walking that we had been paying more attention to.

In summary, she does not have restless leg syndrome!  The sleep study alone can not indicate RLS, and Emma has no other symptoms.  Thankfully.

The parasomnia can actually be linked to disrupted sleep habits, and sleep deprivation.  That makes sense because the kids have had a very relaxed schedule over the summer.  That all changed tonight, as the kids went to bed at 7!

Emma was very relieved to get out of there about 4pm, as was I.  She really is able to persevere, and got her just dessert!

Mom moments

There are those moments in life that stop you dead in your tracks, to pause and let things sink in.

For me that moment tonight was putting hard boiled eggs in a bag for Emma's first packed lunch tomorrow.  Such a mom moment!

As many moms are having weepy moments today because their babies are about to start school, I too am weepy, but happy weepy (if that's a phrase).

The last 7 years have flown by.  At first we really had no clue if Emma would ever walk or talk.  NO clue.  And we just wanted her to be healthy enough to come home, we'd figure out the rest as we went along.

I can't help but recall those weeks when I knew I could not go back to work because I needed to stay home and take care of Emma - after all, where would a daycare round here handle suction, g-tube, and the other paraphernalia, and how much might it cost?!

As the months went on we wondered how she would do at school.  Would she need a nurse to accompany her for feeds and assistance?  Who would pay for it?!

You simply can't plan for the future, just prepare for it while living day by day.

It's been a couple of years since Emma had a G-tube in her stomach, or needed any assistance breathing.  And tomorrow she'll start first grade. 

Her first year of full day school, and I just packed her lunch.  A Nutella sandwich, hard-boiled egg, veggie straws and ice-cold water in her My Little Pony thermos.  She will eat it without assistance, all of it, happily.

I'm so thankful that the smallest of things can remind be of just how blessed we are.

My boy!

This is the boy that is terrified of the ocean and was too scared to get in a pool at the start of the summer!

I love that he has gained so much confidence.