july

July was probably the longest and shortest month of my life. I'm so glad it's over, but I'm not sure how it went by so quickly at the same time. It was a lonely month and a month full of friends and my little family. It was a trying month that brought tears and a month overflowing with happiness. I've had successes and failures and I climbed into bed each night mostly satisfied but completely and utterly exhausted. I would never choose to live this month over again, but I'm grateful for all the little moments I was able to be a part of.

berries blue

Headed to the blueberry patch this morning with Michelle. 

Don't worry that the farm wasn't really open for business today. They still let us pick. So we had the patch to ourselves. And the blueberries were abundant. I picked a few pounds and then Leah had had enough. It was hard to walk away because there were still berries on the bushes! 

Here's to cobblers and smoothies and fresh berries with milk. Parktime snacks, granola toppers and crisps and more.

sister, sisters...

...there were certainly never such devoted sisters. 

Just in the past month, these two have...

dressed alike,

given high fives, 

 apologized when the aforementioned high fives were a bit too rough,

  had staring contests,

taken naps together, 

 supported one another in tummy time and other therapies,

 been on runs together,

 and had sleepovers.

I could not love these sisters more.

Connecticut for a day

One of my best friends from California, Kristen, grew up in Connecticut and had flown back east with her three darling kids to spend about a month with her family this summer. When we realized we'd be so close, we knew we had to get together. 

Leah, Kate and I left right after school got out on Thursday, drove about three and a half hours south and showed up on the doorstep of the most charming New England house I have ever seen. We were immediately welcomed by Kristen and her entire family and from that second on, the fun did not stop. 

We took a trip to Stew Leondards, a local grocery chain that is the most fabulous mix of Trader Joe's and Costco and a farmer's market and a petting zoo. It was darling! We got ice cream and had fun watching the kids pick up right where they left off last summer. 

That night, we rode the golf cart around their beautiful yard, jumped on the tramp and ran inside just in time to miss an incredible rainstorm that made the power go out multiple times. We had a yummy, yummy grilled cheese bar for dinner {seriously! such a fun idea!} before we put the kids to bed. Leah and Kate went down like champs and Kristen and I stayed up chatting like we hadn't missed a beat since last July.

The next morning, we woke to another delicious meal {monkey bread french toast with the most amazing vanilla syrup...Kristen is an amazing cook and it's apparent she learned everything from her mom!}. After breakfast we headed east with Kristen's sister and her four darling boys to the Pez factory. It wasn't as much of a tour as we had anticipated - just looking through large windows to see the machines. But it was so fun to see all the different flavors and dispensers and learn all about the history of Pez. Everyone got to pick out a dispenser {Leah picked Rapunzel - shocker - and she picked Ferb for her dad}. 

We had a picnic lunch outside the factory in the ridiculous heat and humidity and on our way home we stopped at a local farm to sample their fresh, homemade ice cream. I have never in my life tasted better ice cream. I chose peach and Leah didn't want any of it, so I gladly gobbled it up myself. 

On the way home, we had the whole vomiting catastrophe so after I got Leah cleaned up {while everyone else cleaned up Leah's clothes and car seat and watched Kate - they were wonderful!}, my trio climbed in the car and we headed back home. 

It was a fast and furious 24 hours, but I'm so glad we made the trip. Miss Syndey had warned her entire family that Leah was her friend and they had to be nice to her. It was fun to see them all interact and remember each other after an entire year away. I wasn't sure Leah would remember them, but she did, and they picked up like they had never been apart. Kristen's mom just loves Leah and it was fun to see them interact too. I couldn't believe how much all the kids had grown and it made my heart ache to not be living close to them again. I've been lucky in life to have some great friends, and Kristen is definitely one of the greatest.

summer school blues

Leah's last day of summer school was today. 

She was a little grumpy about it. 

To her credit, I'd be grumpy too if I knew I'd be stuck with her boring mom for the rest of the summer. School is way more cool.

announcing Kate

This whole paying-tens-of-thousands-of-dollars-for-an-ivy-league-school is quickly depleting our savings account and more. Thus, the online announcement. Welcome, Kate!

dinner dates

Going into this summer, I knew that dinner time could potentially be a pretty lonely time. I know I have Leah as my buddy, but 1) it's hard to cook for just two people and 2) it's hard to feed someone dinner and then feed myself a cold dinner after that. 

Enter amazing friends. 

Because I'm not the only one whose husband is away this summer, we've been lucky enough to dine with other families on multiple occasions. I think for the first three weeks, Michelle and I ate dinner together with our four kids every single weeknight but one. 

We've had a few mishaps, like when I was cooking a frozen lasagna and it took way longer than it should have, so we had to cook a different meal on the fly. No worries - Trader Joe's to the rescue. And we ate the lasagna the next night. 

We've also deemed Friday night pizza/movie night and it's been fun to try different recipes and see new movies! I did pick up two $5 hot and ready pizzas one night and am so scarred that that probably won't happen again. The Little Caesars is inside KMart here (classy, right?). When I arrived (it's 20 minutes from my house), I realized I forgot the Baby Bjorn for Kate, which presents a huge dilemma. I decided to deal with it and go ahead and get the pizzas because turning around to get it would be an additional 40 minutes of driving. I carried Kate in her car seat, buckled Leah into her stroller and wheeled her in. My arm was killing me by the time I got to the counter as the stroller is nearly impossible to steer with one hand. I thought surely the pizzas would fit in the basket underneath the stroller. Nope. So I jammed one in sitting on its side and carried the other. So now I'm pushing a stroller with a pizza box in one hand and a 12 pound baby plus her car seat in the other, trying to steer. For the most part, people are friendly in New Hampshire, but apparently the ones who shop at KMart aren't because I got no offers for help with doors or anything until I was about 5 feet from my car. They just stared. And the pizza in the stroller was a mess by the time we ate it. It was pretty awesome. And I will never be doing that again. (Please try and refrain from telling me what I should have done to make the situation easier - like putting Leah in a shopping cart rather than the stroller because it could have held the pizzas too. I'll just feel dumb and really, I've probably already thought of it. But at the time she was so dizzy, I didn't think of there being another option other than getting her sitting down from the get go.)

On another note, we've had some great dinners including lots of yummy bbqs and a birthday celebration for Mr. D's 7th birthday at KOTO (here he is sporting his new straw glasses from Leah).

{Doesn't Leah look happy!? Promise she was. She and D especially loved the fire and food being thrown. And don't forget Miss Kate in the background - she was a champ.}

My motto this summer has been the more the merrier when it comes to eating. The conversation is great and it, thankfully, prevents me from eating the same thing for leftovers for an entire week. Three cheers for dinner dates!

the thing about humidity...

So I really like New Hampshire. I like it much more than I anticipated myself liking it, actually. I think it's beautiful. The people are friendly. It has a lot of history and character.

And then it has humidity.

Not that I have anything against humidity in general. My beef comes with the mean, mean things it does to my hair. It's truly unfair. It's not even worth it to try and blow dry my hair on a really humid day because I'll end up sweating so much after two minutes that I'd just need to shower all over again. Plus, my hair is half straight and half curly and all the way big. So I often end up just pulling it up into a pony tail or messy bun.

The other part to this story is that I have a small head. As in I can wear children's hats and I own a beanie that is size 2T and it fits me. 

Whew, glad that's off my chest. 

Combine my small head with my pulled up hair and I basically look like a pin head. It's just not pretty - and it doesn't work on days when I really want/need to look presentable. So I've been searching for hairstyles that can kindly coexist with the monstrous moisture in the air. So far, I've found two options. Forgive the self portraits (remember I'm the only person in the house that can push a button on a camera right now). 

Wavy curls (tutorial here):

Yes, I took a screen shot while FaceTiming with the Mr. who is in India. 

pros: only takes about 20 minutes, lasts for 2-3 days

cons: my hair needs to be dry and mostly straight when I start or it takes a lot longer, would look way better if my hair would JUST GROW a little longer already

Top knot with a secret (tutorial here):

You bet I cut up one of Ryan's socks. In my defense, it lost its mate and was lonely. 

pros: so so fast, can be done from air dried hair

cons: can give me a headache after awhile, definitely have wash and dry the next day because it kinks, would stay in better/longer in the back if my hair would JUST GROW a little longer already

I'm in serious need of more ideas. Any and all are welcomed and tutorials are great! My hair is growing at a ridiculously slow rate - it's honestly never grown this slow before - and I need something to distract me in the meantime so I won't cry about it. Help!

pioneer trek

{Britta Davis Photography}

The primary {children's organization in our church} had an activity today to celebrate our pioneer heritage and do a very small-scale reenactment of the pioneer's trek west from Nauvoo to the Salt Lake Valley. I almost didn't take Leah - I was debating around 10:00 last night. But I decided Leah shouldn't miss out on an activity simply because I'm tired or don't want to make the effort. So, I whipped up a bonnet {tutorial here} and we were ready to go.

They divided all the kids up into families with "mas and pas". They sang songs, played games, stopped at places like Winter Quarters and Fort Laramie, pulled wagons and helped each other along. They got to share stories of their own pioneer ancestry.

{Leah shared the story of her 7th great grandmother, Ann Stephens, who immigrated from England to America without any of her family. She then trekked west, settling in Salt Lake where she worked for Brigham Young. At that point, her family in England decided to join her. Also while in Salt Lake she met her future husband, who was from Canada and didn't speak a lick of English. They courted without much speaking, I suppose!}

I wasn't sure how well Leah would take to walking around and around, so I brought the trusty Maclaran. I also planned to push her around myself, Kate strapped in the Bjorn, simply because I never expect others to do it for me. At most of these activities, parents drop their kids off, but I just don't feel like I can do that. 

It ended up being such a wonderful activity. It was hot, and they were in direct sunlight, but everyone was in such good spirits and really helped each other out. I'm glad Leah was able to experience this mini trek, but I have to admit, I'm glad I took her for much more selfish reasons than that. 

As Leah's ma and pa sort of took over, not expecting me to help out at all {why do I always underestimate others??}, I sat back and watched the activity unfold. I thought about how grateful I was that I wasn't a pioneer. And how much I'm sure they wished they could be wearing the Toms and Nikes and Keenes that were on the field today. How I'm sure the pioneers would have loved some sunscreen or bottled water or bug spray. But what really got me is that had my little family been a family on earth just 150 years ago, Leah most likely wouldn't have made it. 

I teared up thinking about it and I'm tearing up now just writing that blasted sentence. 

They didn't have the medications she needs. They didn't have the therapies that have helped her to thrive. They didn't have space in their wagons to let someone ride the entire way - she would have had to walk or be carried.

They did have families - ones with wonderful mas and pas and siblings like the ones in Leah's family today. Having a family would have provided support and love and joy in the journey, but sometimes just having a ma or pa that is willing to do anything physically for their child isn't enough. And I'm pretty sure it wouldn't have been enough for Leah 150 years ago. 

When the activity finished and we had gobbled up our yummy potato stew and homemade bread with mouthwatering homemade jam, I gave Leah and extra long hug. I'm forever grateful for Leah's fighting spirit - and for the blessing it is to be fighting this fight now, not then.

we can't get enough of this place!

We love North Hartland Dam. 

Close enough to head over at a moment's notice. Far enough away to make it feel like a fun and beautiful excursion. 

Just pack a lunch and some sunscreen and call it a day. 

 

You don't even have to skip your nap if you don't want to.

a seizure post not for the faint of heart

Seriously. If you don't want to see pictures that might very well make you tear up, please do not continue reading this post. Just skip it and pretend like Miss Ribbons has never had nor will ever have a seizure and don't try to imagine what she might look like if she did. 

Also, I'm posting this for two reasons: 1) It is a very real and very big part of our lives right now. Seizures have pretty much taken over our little girl for the last 10 months and Ryan and I have been on a mission to make. them. stop. 2) I've had a lot of questions from others {Rett families, doctors, friends/family, babysitters, teachers/administrators, etc.} about what she looks like when she seizes. 

So, here you go. 

First, Leah's seizures have kind of morphed over the last 10 moths. When they first started, she got really stiff and then would have this pulsing action go throughout her entire body. It was really creepy to watch and incredibly sad. Afterward, she was exhausted and would sleep a lot. She usually had one bad day with 5-15 seizures and then none for a span of a few weeks. We started her on Keppra (Levetiracetam) and increased the dosage slowly over the course of a few months.

Around the beginning of the year, the seizures started to increase in number. Sometimes she'd pulse, sometimes she wouldn't. But she'd have two one day, then none for a few days, then six, then one, then none. There really was no rhyme or reason to it. She'd have them while watching TV, or while sleeping, or while at school, or in the car, or when running in the field. We continued to increase the Keppra.

In March, she continued this trend, but also had tiny seizures every once in awhile. She'd stare off into space and then snap out of it. And then stare. Then come back. She would do this for a few hours - 20-30 even. We continued to increase the Keppra.

Sometimes we can "snap her out of it" by saying "KA-POW!" Leah thinks this is hilarious and will sometimes start to laugh and come back.

By April, the seizures were just more of a stiff body and staring eyes, but not so much pulsing. She also had them pretty consistently every day - usually 1-3. She could have them in church and not a soul around {no pun intended} would even know. Sometimes she will make different vocalizations or outbursts after, but if you're not familiar with what she normally sounds like, you wouldn't know the difference. To be honest, I much prefer these seizures to the pulsing ones, if I have to prefer one at all. Ugh. Near the end of the month, we started her on a new medication called Clobazam (Onfi) in addition to the Keppra, but reduced the Keppra dose a bit.

In May, she continued to have 1-3 each day and they varied in length from about 15-90 seconds. Sometimes she'd nap after, sometimes she wouldn't. But the Clobazam was making her a monster. And a zombie. Can you be a monster {mean} and a zombie {seriously sleepy all the time} at the same time? Yes, you can. I called her a human pinball because she would walk around the house running into walls and chairs and doors and counters, bouncing off and walking right into something else. If you're wondering, he head is exactly the same height as all of the door handles, which is perfect. She was so dizzy. She kept her strength for things like stairs but could never do it by herself because she was so unsteady. We played around a bit with dosages but continued on with Clobazam and Keppra. 

By June I'd had enough of Clobazam. Her seizures were pretty steady at 1-3 each day {that we saw}, but she'd still have between 4-10 every once in awhile. I figured if the medication wasn't doing its job of getting rid of seizures, there is no side effect in the world that is worth it. And so we started to ween her off the Clobazam. 

This month we got her completely off the Clobazam, used just Keppra for a week and, just this week, started her on Depakote (Divalproex). Her seizures continued as normal for two days and then yesterday she had ELEVEN. She couldn't even lift her chin off her chest more than once the entire day. I think she smiled only once and she took a three hour nap. That never happens. 

But today, TODAY, she had no seizures. I'm quite sure that hasn't happened for at least a few months. It could be a fluke, but I really hope it's not. She was still a bit unsteady, but so much better than she has been. And SO much happier. It was wonderful to see. Since we've taken her off the Clobazam she's been so much more gentle and kind. I just hope we're headed in the right direction. It's been a long 10 months for us - and most definitely for Leah. Getting this under control will help us to move forward with eye gaze and Kindergarten and so many good things. Here's to hoping!

As for what she looks like, these pictures were taken last Friday at Kate's checkup. I hate looking at them. But if it helps someone to not feel so alone, then it's worth it. If it helps someone to not be so afraid, then it's worth it. If it helps someone to have a desire to learn a little bit more or be a little bit more understanding, then it's worth it. Most definitely worth it. 

First, the stiffness. Honestly every single muscle in her body contracts. No wonder she's tired afterward!

 More stiffness with the beginning of the stares. Her left arm often turns in like this.

Her body then relaxes somewhat, but she's obviously not back to normal. Staring off {for her, always up and to the left}, and often lots of drooling.

One of the hardest parts for me to watch is her eyes. Those beautiful, bright blue eyes that are usually so clear and full of life suddenly become clouded and so...lifeless. It's awful.

And more staring. When we're outside I have to make sure we cover her face so she doesn't stare into the sun.

And there you have it. Feel free to ask any questions - I'm happy to answer if I can. Also, can I just give a shout out to Leah here? She takes her medication like it's nobody's business. She is the bravest girl I know.

the hip bone's connected to the...

Kate had an ultrasound appointment this morning to check the status of her hip joints. I guess all breech...or caesarean...babies {she was both and I don't remember which one the ultrasound was for...I'm tired} are at risk for their hips to slip out of their sockets. 

They jostled, poked, prodded, and pulled and she laid on the bed calm, collected and very much awake the entire time. 

The verdict? All balls, sockets and joints are in perfect working order. 

Hip hip hooray!

eye gaze evaluation

For a few years now, we've gloated about Leah's eyes. Not only are the beautiful, bright and blue, but they truly are the way Leah speaks to the world. I've been so happy to have a way to enable her to at least say yes or no or make some decisions for herself.

And this week, we put a lot of pressure on those beautiful blues. 

Leah had an eye gaze evaluation. Sounds so official - because it was. A wonderful woman came to our home to watch our little Leah in action. She played games, made choices and sang songs with her eyes. And then, on two separate occasions, test drove two different eye gaze computers. 

If you haven't ever seen an eye gaze computer in person, you are missing out. The technology itself is amazing {and comes with a price tag to equal its amazing-ness}, but they are incredible in a way that is completely indescribable when that simple computer opens up a whole new world of communication to someone who has never had that kind of freedom of expression. 

I was nervous to say the least. What if Leah was having a bad day? What if she couldn't get the computer to calibrate to her eyes? What if she was too tired? What if she couldn't quite figure it out? What if the evaluators thought an eye gaze computer just wasn't the solution for her? What if, what if, what if. 

Well, all those worries were for naught because Leah blew their minds. The first day she was Wild with a capital W. The girl would not sit still. But she still figured out a way to get her little body over to the computer to make her choices and that was pretty impressive! The second day she was tired, tired, tired. So she sat, which was good. It took a minute to calibrate, but she was going strong long after we asked her to perform. She sat and colored a picture with her eyes {choosing colors and icons to add to her blank computer screen canvas} as I chatted away with the adults. 

For now, we wait for the actual written evaluation, but we are all pretty certain she'll get a trial - a time to test out hopefully two different computers to see which suits her best. There are pros and cons to each, but either way, we feel blessed to get this ball rolling and to hopefully hear, for the first time ever, what our little Leah has to say with those beautiful blues.