natural history study: take 3

headed back to oakland for the semi-annual natural history study for rett syndrome. last march was our first visit and my emotions were all over the place. it was then we met sweet avery and her incredible family and everything seemed okay. so this visit marked our one year anniversary. how cute.  

we went back in october for our second visit and it was indescribably better knowing what to expect and knowing more families. 

this, our third visit, continued the trend. i knew most of the families there and even felt at little at home. being in a room full of people who are dedicated to bettering life and finding a cure for leah is a feeling i can't describe. 

she met with dr. neul this time. although she missed her boyfriend, dr. glaze, who couldn't make it, dr. nuel was a great second best. my favorite comment from him, "she sure breaths a lot, doesn't she?" um, yes. she does. 

and this time, we weren't the newest members of the club. we met a darling family from utah with a daughter named lucy. she was probably the cutest three year old i've ever seen. talk about a small world, her dad grew up just east of where i did and went to high school with my cousins! they live about a half hour from my mom's house and we chatted about all things utah for quite some time. they had so many questions and are still kind of in the thick of the regression that we're now crawling out of. it honestly felt so good to know that i can now be a support to someone else. that i'm not just relying on others and asking them questions, but i can also be relied upon and share what we've learned. this particular family also shares the same religious beliefs as we do which is just an added blessing. little lucy has two amazing parents dedicated to her growth and development as well as two super handsome older brothers that simply doted upon her. she's a lucky little girl. and i'm so happy to have met her!

after the study, ryan took leah home and colleen and i stayed for a parent meeting where i sorted out some final thoughts on my government funding predicament. i'm feeling good about my decision and how we'll proceed to help give leah the things that she needs. and a lot less stressed. at dinner just before the meeting, colleen and i found the best parking spot ever. good thing they marked it compact. we were in a SMART CAR and didn't even fit in the lines. the couple next to us in a mini cooper didn't even stand a chance.

i almost burned the house down

ten points goes to whoever can figure out what these were. 

yah. potatoes. blackened. 

i put them in the oven at 3pm, with the intention of taking them out at 3:30 before we left for leah's checkup. about a half hour into her checkup - an hour and a half after i put them in the oven - i gasped. they were still in the oven. and the oven was still heated to 425 degrees.

as i rush home, i frantically call ryan {who is also on his way home via a ride from our awesome friends}: "if you get home before me, PLEASE take the potatoes out of the oven and turn the oven off...that is, if we still have an oven. or a home." 

i got home probably two minutes before ryan around 5:15. opened the door to the smell of burning wafting through our house. smoke was coming out of the burners on the stove and the potatoes looked, well, you know. they were light as a feather. there was nothing in them. 

and so we went out to eat. shrimp tacos never tasted so good. 

and if you're wondering what i was planning to serve my family for dinner, here is the recipe. it's terribly delicious and is a staple at our house. i ended up making it last night. and the potatoes weren't nearly so well done. 

baked potato soup

3-4 potatoes, large (baked and cooked beforehand...but not burned)

2/3 cup flour

2/3 cup butter

3-4 cups milk

1/2-1 tsp. pepper

1/2 tsp. salt

4 green onions, chopped

12 slices bacon, cooked and crumbed (i actually chop up ham and fry it until it's crisp)

8 oz. sour cream

1 cup cheddar cheese, shredded

1. bake potatoes at 400 degrees for 1 hour. Cool, then cut into bite sized pieces.

2. Melt butter in sauce pan and add flour. Mix completely, whisking out lumps. Cook for about a minute, then add milk one cup at a time and stir until bubbly.

3. Add potatoes, salt, pepper, green onions, and bacon or ham. Cook until hot then add sour cream and cheese. Can add more milk, if necessary. 

4. Can serve with extra green onions, bacon/ham and cheese sprinkled on top.

four year checkup

leah's four year checkup went off without a hitch. we love our pediatrician. she truly goes above and beyond to help us find the services and things we need. and if she doesn't know the answer, she finds it for us. last year, my list of to-do items after her checkup was such a laundry list that she typed it all up with referrals and phone numbers and addresses and urls and additional info and mailed it to me. yah, we like her. 

this year there was a little less to do. leah's growing, growing, growing...but only up, not out. she's still just shy of 30lbs putting her in the 5th percentile for weight and is 39 inches tall, the 30th percentile, i think. 

the nurse wasn't sure what to do for the hearing and vision test when she learned that leah could neither speak nor use her hands. you should have seen the look on her face. and i again wondered, "is it too much to ask that a note be put at the top of my daughter's file, perhaps in big, red lettering, mentioning a few key facts to make the appointment go smoother?" i digress. 

leah's health is looking good. and she has rett syndrome. other than that, we're good to go. but we couldn't leave without first getting some of her four year immunizations. we played dress ups while we waited. 

i opted for her thigh as it would be easier to hold still. leah was giggling like crazy until mr. nurse jammed a needle in her. she didn't cry, she just looked shocked. i wish i had a picture. #2 needle. even more shocked. #3 needle in the other leg, still more shock. as he finished, i scooped her up and told her how proud i was of her! no crying at all! as we climbed into the car, i again praised her for being so amazing and strong when her lip quivered and a tear rolled down her cheek. my little leah is incredible. 

that was the only tear she shed. i gave her a big cuddle and she relaxed into her seat for the drive home. really, truly amazing. it's a good thing she's so strong. she has had - and i assume will have - more than her fair share of pain in her life and her strength sure gets me through.

i think i'll just take one, thanks

a few things to blog about...and hopefully time to do it this weekend. it's raining, raining, raining here and i kind of like it. leah looks too cute in her galoshes to moan about the wet stuff. 

but just a quick thought from the grocery this morning...does anyone else think it would be a better idea to NOT stock up and save? hmm....

speaking of the grocery store, if you live in the bay area, go shopping right now. seriously. NO ONE is out there! no lines. great parking spots. you'll be done in a jiffy. i went to three stores this morning in half the time it normally takes me!

leah {finally} had a party

back in february, it was rainy, rainy, rainy. i wanted to throw leah a party, but i just couldn't muster up the emotional energy to do so. plan games and activities for other kids when leah can't do any of them herself? no thanks. but we LOVE leah's friends and we really wanted to celebrate. 

so, i decided on a park party. it would just have to wait until the rain subsided. and we'd have a rainbow theme because one - leah loves rainbows and two - rainbows are much better for parties than rain! ironically, leah's actually birthday was bee.yoo.ti.ful. remember how we played with bubbles outside? seriously, weatherman. not a drop of rain. sun was shining. it even felt warm. but, because we had trusted the weatherman, we postponed. until march. until a day where the aforementioned weatherman said only a 20% chance of rain {which always means no rain where we live}. so we sent out the invites and baked our cake. 

a rainbow cake, to be exact. 

i used three boxes of cake and FOUR, count them FOUR tubs of frosting. we had three and it wasn't enough, so we had to go back to the store to grab another one, which was barely enough. but i loved it! 

leah had her own ginormous piece. 

and when i was putting it together, ryan made me laugh because it was HUGE and when he saw the tops that i had cut off he said, "wow. did a clown poop in our kitchen?" that ryan, i tell ya.

leah liked it too. 

all weekend, it rained. and rained. and rained. and monday morning - the morning of the party - was no different. so we invited all 21 of leah's friends to our house. three couldn't make it, but 18 could. i zipped over to target that morning and, thanks to their new "spritz" party line, we found a plethora of rainbow-themed decorations and ran home to prepare.

it was fine. nothing spectacular. noisy and crowded, as was to be expected. but the party guests were fantastic and really showed leah how much they care. she has the best friends in the world. so do i. we're lucky girls. we ate pizza on blankets and popped balloons and pinned tails on a donkey and gobbled up rainbow cake. 

and leah had a meltdown. 

i tried to figure out why and my only idea is that she is really starting to see how much other kids can do all by themselves. and how much she has to rely upon me for everything. i was busy cutting the cake, so i couldn't feed her immediately. i was busy dizzying blind-folded kids, so i couldn't watch her. etc, etc. and she flipped. it broke my heart. but - for the moment - it was nothing a big, long hug couldn't fix. i just dread the day when there just isn't a hug big  enough to hide all the pain for my sweet, strong leah. 

but, we partied hardy. and it was a great morning celebrating our silly little four year old.

oh yah. right as the party was ending, it stopped raining. 

productivity at our house

it's a rainy basketball-watchin' day at our house. please take note of the first game on tv and a 2nd game being watched on the iPad on the couch. needless to say, we've been quite productive around here. 

 here we go cougars, here we go!

wanted: a hole to crawl into

am feeling a bit overwhelmed today. 

i have my regular old to-do list that's nagging me {including leah's christmas present - that weighted blanket i have all the supplies for but just haven't found the time to make.} but i have this entirely different to-do list and i don't even know how to tackle it. 

you see, leah has a lot of needs. and there are ways to get those needs met. there just isn't a guidebook on how to do it all. and i'm not the sharpest tool in the shed when it comes to government organizations or insurance companies or even special needs in general. 

my biggest concern for leah is her communication. the poor girl has so much to say and has so many opinions but her dummy of a mom just can't figure it out. i'd love this or this to just show up at my house. but that's not going to happen because they're both $15,000+. i made some headway today by speaking with a speech therapist referred to us by a friend. i now need to get a prescription from her doctor for speech therapy as a first step. beyond that, our private insurance will pay $2500. that's great. really, it is. every little bit helps. but i still don't have a spare $12,500 hanging around. we need to get trials to see which one works best for her - or if they don't work for her at all. and then she has coloboma so we have a few other kinks to figure out with her eye gaze. we have to get reports written up by various therapists and doctors who have worked with her as well. and i'm getting yelled at on every end for not enrolling her in medical. 

that's a whole different story. 

not that you can just enroll with the blink of an eye anyway. there are a lot of things you have to do to get there. and i haven't felt good about any of them. these government programs are in place for a reason. and i'm so grateful for them. but i don't want to take advantage. i've known a lot of people who have taken advantage of one program or another and it drives me up a wall. they're there for those in need, not just for those in want. we have a need, but i'm not sure it's great enough to insist california pay for all things leah-related. 

but then, how great would that be? 

i've had the paperwork sent to me twice and i just haven't felt good about it. and then i found out today it's nearly a surefire way to get an eye gaze device paid for in full. 

all the while, i have the cutest little four year old hanging on my arm, staring into my eyes, trying to tell me something. anything. if i could only understand. i know this computer would help, but i just don't know how to morally go about it. 

there are lots of other things we could insist upon, but we don't. therapies, respite, even diapers. again, these services are offered for a reason and i know lots of people who get them and truly need them. then i think that we're not getting any of these, so can't we just get a computer? 

leah also needs a new stroller. she's still in an umbrella and she's just getting too tall. it does not look comfortable. they have special needs strollers that are relatively inexpensive {still a few hundred dollars}, and they have stroller/wheelchairs that are awesome, but a bit pricier. i truly am grateful she still walks, but she can't walk long distances and often trips and falls.

am i reading into it too much? am i being unrealistic? is the computer necessary? should i take advantage of programs offered without feeling guilty? 

can i just crawl into a hole and come out when the problem is fixed for me? or find a money tree? that would work too.

for now, i'll just try to slowly check off my phone call to-do list. insurance company included. if i have a blank expression on my face for the next few months, you'll know why.

canvas mod podge tutorial

how have i not posted this yet? i know lots of people asked for this tutorial, and i just never posted it. sorry about that. here goes....

this project is extremely simple and a bit complex at the same time. mostly, you just need to prepare and make sure everything is to your liking before you go ahead with the wet and sticky mod podge. 

all you'll need is: 1 plain wrapped canvas, 1 foam paintbrush (the wider the better, i say), mod podge, a bowl for the mod podge, and paper cut to your liking. i also like to have some wipes on hand as my fingers get really sticky and i like to occasionally clean them off throughout the process. but definitely not necessary.

for my backgrounds, i like 4-5 different patterns of paper, all in the same color family. different textures work great too. for the actual picture, i still like to keep it simple, keeping in similar color families or patterns. that said, i often use the scraps i have on hand so that rule doesn't always apply. just play around with the papers to make sure you like them in advance.

step 1...

cut the background pieces into smallish squares and rectangles. nothing fancy, random is best.

step 2...

arrange the pieces on the canvas to your liking. remember, if you don't like how it looks, NOW is the time to change it as nothing is permanent!

step 3...

pour the mod podge into the bowl and start sticking. i work from the outside in. i often move the pieces, all arranged, next to the canvas, so i can put them on in the right order without getting everything messy. you can be generous with the mod podge. paint the back, then stick it on and paint the front. be sure to get all the air bubbles out and if you're working with a lightweight paper, don't take too much time, the paper will get wet and start to tear. just work quickly!

step 4...

when all the pieces are in place, paint the entire canvas with a coat of mod podge, making sure that the brush strokes are all in the same direction and there are no air bubbles. let dry. (i usually wait overnight.)

step 5...

arrange the animal (or other image) to your liking. as before, change whatever you don't like now, before you stick it on permanently. (trick: i often use things from my house as stencils for circles and other shapes that need to be accurate, e.g., spice bottles and bowls or glasses are great for circles).

step 6...

start sticking. remember to work from the bottom up. for this bird, i did the tail feathers, the legs and the beak first, the body next, and finally the wing and the eye. 

step 7...

paint the entire canvas with another layer of mod podge. don't skimp. and try to keep the brush strokes in the same direction. press out any air bubbles from the animal and then let dry completely. a full day should do the trick. it could be dry to the touch, but still tacky, so it really is worth it to take the time to let it dry completely. 

voile! i nailed metal hanging strips to the back of mine for them to be displayed on a wall, but you can display however you'd like.

how i make it make sense...

i've met a lot of amazing people in the last year and a half. some i've met in person, others just virtually. but no matter if we've had actual face time or not, i've learned so much from them. i often read excerpts from various blogs and feel like what was written could very well have come straight from my mouth. other times, i have a different point of view. either way, it's been an incredible experience to learn from others and grow along with them by learning about how they see the world.

when leah was first diagnosed, i wasn't sure how to make sense of it all. she was in such pain. it was nearly unbearable to watch. as time has passed, we've had our bumps, but it's almost like she's settling into her body and figuring out how to make things work. so am i. we've got a looooooong way to go, but we're working on it. 

and yet, i'm still trying to make sense of it all. i wonder all the time what it would be like if she could just use her hands. it would be fine if she couldn't talk, she could communicate by signing or she could eat by herself, or play with the toys she wants to play with, etc, etc. i wonder why she has to suffer. and then she cruises by me with the silliest smile on her face and i realize that yes, she suffers, but she's still happy. we both suffer from rett syndrome. and yet we suffer from it very differently. i'm not sure why this was our lot in life, but it is. 

i read a blog post yesterday from a wonderful mom in europe who has a daughter just younger than leah. in the world of rett syndrome, this sweet little girl suffers a lot more than leah. she cannot walk and has lots of other issues that leah has yet to struggle with. this mom is a writer who i resonate with all. the. time. she writes things and i think, "wow. exactly!" this particular post was about a "reason" for rett syndrome and her final thoughts were that there was no reason for it, thank goodness. it was caused by a chance mutation of a gene at conception and rett syndrome was the result. and this "reason", for this mother, worked.

she said she didn't feel it was part of any grand plan and didn't see how a higher power could have 'let it happen'. i actually loved when she said, and i quote, "how bizarre that would be - letting our children suffer so their parents become more saintly."

i immediately agreed...and disagreed. it was so strange. my feelings were pulling me in opposite directions and i couldn't find an answer to make it make sense in my brain. i thought about it all night and all morning and i still don't have a solid answer, but i've simply settled on faith. 

i agree that heavenly father - or whatever higher power you might believe in - does NOT let children suffer simply to make their parents more saintly. i disagree, however, that it is not part of a grander plan. i know it is. 

i believe {and this could very well be a unique view} that we lived before we came to earth and we will live again once we've passed on. i also believe we knew a little bit about what our lives might be like while on earth. i don't know how much we knew or agreed to, but i believe it was enough to make an informed decision. i also believe that we all have agency, so no matter our struggles, we can choose how to respond to them.

some struggle with issues they were born with. some struggle with issues stemming from their own choices. some struggle because of the poor choices of others. some struggle from addictions. others physically. others mentally. others even socially or spiritually. some suffer for others. sometimes suffering is for absolutely no reason and can definitely be avoided. other times, there is no way of getting around it. and yet, no matter the reason, no matter the why behind the suffering, we can all choose how to act. how to deal. to rise above or be dragged down. i'm sure with every trial, we do a little of both. no one is perfect. and if we knew how to get through, it wouldn't really a trial and we'd probably learn very little, if anything. 

i cannot sit here and tell you that i wouldn't change a thing. some say that if they had it all to do over again, they would choose their trials. their struggles. their joys. i'm not sure i would. it's hard to watch my child struggle for no fault of her own. it's hard to know she will most likely be made fun of or have rough days and she did nothing wrong! it's hard to know we are constantly being left out of things - parties, play dates, trips to amusement parks and more. if someone called me today and said there was a cure for rett syndrome, i would grab leah's hand and the hands of my fellow rett friends and RUN to the cure. but, i would never ever ever give up the things that i have learned. 

on more than one occasion {many, many more}, i have dropped to my knees and forgotten all about myself. i have wanted nothing more than peace and happiness and relief for my daughter. on more than one occasion, my eyes have been opened and i've seen others as our heavenly father sees them. on more than one occasion, others have opened up to me because some of my struggles are so visible. i am not perfect and i'm not saying that leah's struggles have made me more saintly. but, since i can't do anything about them, i have chosen to have them help me to learn. i know leah struggles as well, but i truly believe she's still happy. she still has joy. and to be honest, i think she responds to her struggles in a more grown up way than i do. 

like i said, this is just my point of view and it could very possibly be quite unique. but i believe we struggle with various issues throughout our lives for a reason. and i believe others are put in our paths at specific times for a reason. i believe we are given the tools necessary to get through our trials because it is part of one big plan and there is a point to all of it - even if we don't know exactly what just yet. and i believe we have help along the way. sure, it's still work. and yes, it still stinks. but we can do it. we knew that before we came here. and that makes sense to me. 

how do you make sense of your struggles in life?

sick of being sick

there is something going around. and sadly, little leah didn't escape it. neither did big ryan. but i think leah had it worse. she was sick for the better part of her winter vacation and even missed two days of school when it started up again. 

our days {and nights} were filled with high fevers {reaching 103.8 at one point!}, red cheeks, lots of cold wash cloths, a few tepid baths, lots of sleeping and little to no eating. 

we went to the doctor and think it might have been a sinus infection. hard to tell when she can't tell us what's hurting! but, she's on antibiotics and is back to her normal self. we didn't lose any weight, thank goodness. we maintained. and she's had more to eat for dinner than ryan or me for the past three nights. 

three cheers for healthy leah!