so long, farewell...

The man of the house left to work for John Deere this week. I held it together when he kissed Kate goodbye. 

His goodbye to Leah nearly killed me. 

I drove him to the coach in the early morning hours last Sunday and sobbed as he walked away. 

I don't think he knows that. He probably thinks I'm made of stone because I didn't cry in front of him. But, since he reads the blog, he's now in on the secret that I'm actually just a big softie. 

We've been able to Skype and FaceTime and since we are exactly 12 hours behind, it's actually pretty convenient. 

My goal for the summer is to simply keep the three of us here at home alive. Anything above and beyond that is simply a bonus. One week down, ten to go.

date night

In keeping with my annual goal #4 - and because I kind of like Ryan, we took advantage of my mom being here and went out for a night on the town. 

We stuffed ourselves silly at KOTO - a ridiculously delicious hibachi grill restaurant. And then we decided to check New Hampshire off of our list of states we have mini golfed in. I won the front 9. Ryan took me to school on the second 9. We'll call it a tie. 

Then Ryan wanted to head to the driving range. I decided I'd like to keep my incision in tact, so I watched him...stretch

...and hit a few balls. 

We headed home early so he could pack for China. {Yup, he was leaving the next morning at 6:30am and he hadn't packed yet.} A perfect night out with a perfect gentleman.

the end of an era

After three years, Miss Leah had her very last day of preschool. It's hard to believe that three years have gone by since the day we walked up the little ramp to her early start program in California. So much was unknown then. So much was better. And so much was worse. 

It was there, in that first classroom, we were led to her diagnosis. And it was in each classroom since that we have seen just how much of a fighter our Leah is. She is one strong, smart, determined little girl. 

 first day: may 2009

last day: june 2012

Kindergarten better watch out.

natural history study take 4

Ryan and Leah drove down to Children's Hospital Boston for Leah's fourth visit to the natural history study. They do it a little different in Boston than they did in California, in that it's kind of a regular office visit. Some of the doctors that participate in the study are located at Boston Children's, so they don't have to travel and do everyone all at once. 

To be honest, I prefer it the other way because I think it's awesome to get to mix and mingle with all types of Rett families twice a year. But we are grateful for wonderful doctors in such close proximity. 

Our beloved Dr. Khwaja no longer works there, which we are really sad about. But they were able to meet with his replacement, Dr. Kaufmann, and Ryan reported nothing but good about him. Hooray! 

Leah also visited the Laboratory for Cognitive Neuroscience for Leah to participate in a new study. She got to wear this snazzy EEG cap and watch a bunch of fun things. She basically had the time of her life. We won't talk about the mess that was her hair and how wonderful it was trying to comb it out when she got home. 

 

On their way home, they stopped at Target to pick out some new toys with a gift card from Grandma and Grandpa Layton and then they picked up Grandma Hauley at the airport to begin a week of fun! 

But the best news of the entire day is that she now weighs 17.6 kilograms. I know, what does that even mean!? I had to look it up, but Leah is now a whopping 38.8 pounds. I KNOW! I almost didn't believe it either. But I've lifted her recently, so I know it's true. Three cheers for Leah!

to church we go

Kate was feeling extra religious and decided she'd like to try her hand at church. She dressed in her {sister's old} finest, but made sure to don a new hair bow...

...which she decided to turn into an eye patch half way through the first meeting. 

As for the remainder, she basically rocked it; which is no surprise coming from this baby super hero. 

I even nursed her in the mother's lounge without being brought to tears - unlike the situation I found myself in 5 years ago. I've come a long way. 

And just for comparison's sake, here is big sister on her big first day - March 2007.

cape cod strollathon

We took a quick little trip down to Cape Cod to participate in the 7th annual Cape Cod Strollathon for Rett syndrome. We've only ever participated in one strollathon before - the inagural event in Northern California in 2010. And Ryan wasn't even able to be there. So this was a first for the whole family. Our good friends the Holbrooks {3/4 of them, at least - their dad had already left for his internship!} joined us for the event and we were so grateful to have their support.

We drove down on Friday, hoping to get there in the late afternoon to spend ample time in the pool. After a quick stop at Target {do you hear the angels singing!?}, we got caught in some super awesome Friday afternoon Boston traffic that delayed us for more than an hour. Miss Ribbons didn't seem to mind at all per her usual chill attitude when in the car. This picture is one of my new all time favs, taken through the headrest on my seat. 

When we got to the hotel, Michelle and her boys were already there, so Ryan and Leah joined them in the pool while Kate and I lounged poolside {curse that c-section, but at least I had a buddy}.

We found a local restaurant to grab some dinner and then tucked ourselves in for the night.

Leah even got her very own queen bed and was out in about two seconds. 

Which is a good thing because Kate wasn't out. I think this was by far her worst night of sleep. She was awake, crying, for hours! Ryan and I were exhausted, but Leah slept through the whole thing. Phew! And Kate did finally tucker out. 

We found out in the morning, she was just up late working on getting that darn belly button to fall off. Hip hip hooray!

The next morning, we woke to see the forecast of rain was, actually, correct. It POURED during the entire event. Luckily we were under a great big tent so we stayed dry for most of it. They decided to go ahead with the stroll even with the rain, but shortened it from three to one mile. Ryan, Leah and Damon braved the wet skies while Michelle, Brixton, Kate and I stayed under cover.

 

 Damon was probably Leah's biggest supporter. He stayed up late the night before making this awesome sign for Leah and he carried it around during the entire event. I've never been more proud to proclaim - with shirts and signs - that We are Team Leah. 

We filled ourselves with hot dogs and ice cream and had a great time. Ryan's favorite part was by far the tanker-truck turned grill. This thing was awesome, so I obviously promised him one for graduation.

We chatted with some friends we've met mostly online and were introduced to some new ones. The event was ridiculously successful, raising more than $100,000 to fund research to find treatments and a cure. Jennifer and Justin Endres deserve countless pats on the back for pulling off an event of this caliber for the 7th year in a row. 

We stopped for some local chowdah before heading home in one of the worst rain storms I've ever driven in. Again, our two amazing passengers didn't seem to mind.

It's always overwhelming to me to walk into a room where everyone is there because they know and love someone with Rett syndrome. A room where everyone knows the ups and downs, the highs and lows, the goods {???} and bads of what has been our life the last three years. I often get overwhelmed with how different Leah's life is from what I initially anticipated. And then I get equally overwhelmed in a completely different way when I realize there are individuals who dedicate their lives to finding treatments and hopefully a cure for my little Leah and so many others like her. I chatted with parents, care givers, nurses, siblings, therapists, doctors, clinical employees and more. The Chief Scientific Officer of the IRSF nonchalantly wandered up to me and we chatted for a good 20 minutes about Leah and various trials for medications and treatments that are currently in process. It's just amazing. 

It's a room I never planned to walk into, but it's filled with people I am ever so grateful to have met.

dinner club

I was lucky enough to be part of a dinner club this year - a group of fun, funny, beautiful and simply wonderful women who got together once a month to taste one another's culinary creations. There was a theme each month and, although I joined late in the year, I tasted some delicious Mediterranean, Mexican and breakfast dishes. As some of the women were moving on to bigger and better places {read: there will be a paycheck in their future!}, we decided to go big for our last meeting and go out to dinner. 

back: Heather, Eliza, Chandra, Maren, Kelly, Cassandra

front: Sarah, Tasnime, Emily, Liz

not pictured: Stephanie, Marina, Jenny

We chose a Japanese Hibachi grill and had a great time. We watched our chef toss and twirl sharp knives, light an onion tower on fire {and put it out with a plastic peeing doll} and launch zucchini at our faces. I was one of the few who actually caught the zucchini in my mouth, but there is no picture to prove it. Just my good word. And believe me, it's good.

I will definitely miss the women who are moving on and hope to continue to dine every month with the ones who are staying.

photo a day may

I took an Instagram photo a day challenge during the month of May. I kind of loved it. A reason to take a picture every day. And not always the one you'd expect to take. 

I joined on day 3, so the first two are missing. Day 16 was "what you're reading" - and I think at that moment I was reading the user manual for my pump...and didn't manage to get a picture. Bummer, I know. 

Also, I'm pleased that I only misread one day {not bad for the lack of sleep I got last month!} and did day 24 twice rather than doing day 25 which should have been "unusual". Although, I will say that babies loving tummy time is unusual...and Kate loves it! So, she's new and unusual. It works.

3. something you wore today

4. fun!

5. bird

6. you {there are two of these}

7. someone that inspires you

8. a smell you adore

9. something you do every day

10. a favorite word

11. kitchen

12. something that makes you happy

13. mum

14. grass

15. love

17. snack

18. something you made

19. a favorite place

20. something you can't live without

21. where you stand

22. pink

23. technology

24. something new

25. unusual something new

26. 12 o'clock

27. something sweet

28. the weather today

29. a number

30. your personality

31. something beautiful

ktg: zero weeks

I just made an executive decision that "Kate the Great" can also be written as "ktg" in case I ever get lazy while typing. 

Now that that's settled, onto documenting her first year of growth just like we did her big sister's. 

Here is zero months. {Except it's really 0.5 months because I just kept NOT doing the mini photo shoot until the month was half way over and she had gained a pound and grown an inch.}

She was a rock star at her one week checkup. I was worried about her getting enough to eat since she is always falling asleep while nursing. At her two week checkup, I found that she now weighs 9 lbs. 4 oz. and is 20 inches long.

I'm not worried anymore. 

Three cheers for chubby babies!

grandma and grandpa layton

Grandma and Grandma Layton came to meet Kate!! While they were here we gave them a tour of all the Upper Valley has to offer {Tuck, parks, museums, cheese/maple tasting, church sites and more were obviously included} and in return they simply spoiled us all. It's always fun when grandma and grandpa come! 

After not being able to meet Leah until she was 9 months old, I think this was a special treat for them.

The group pics must be on their camera because I can't find them on mine! But, most of our time was spent doing this anyway:

They helped Leah pot some plants. Our porch is definitely a more beautiful place. 

Grandpa even got to help me get some prints of Kate's feet. She didn't like it. But I'm pretty sure grandpa didn't mind the cuddling involved in helping her calm down.

When they left, our bellies were full, our house was clean and Leah was simply worn out. That pretty much means Grandma and Grandpa are welcome back any time!!