so, let's go back to April 20th, shall we?

ashlyn's been battling chronic headaches for years now. headaches which the doctors always said were sensory related.

but 3 months or so ago, her pediatrician sent her to a neurologist to be evaluated since they've been persistent.

and the rest goes a bit like this:

• neurologist diagnosed her with pediatric migraine and ordered a CT scan of the brain.


• CT scan showed normal brain structure, but enlarged adenoids and mucousal thickening in the para-nasal sinuses.


• neurologist referred us to an Ear, Nose, Throat doctor (ENT).


• at the time she was on a 30 day regimen of steriods for her Morphea with verbal threats of wanting to die. :(
  


• ENT decided that she needed to see an allergist to be tested because of her sisters history, and repeat CT scan in 3 months.


• meanwhile, she gets allergy tested and has no allergies.


• and we wait.........and start a new medicine to improve sleep and hopefully reduce frequency of headaches.
  


• then on April 20th, she had her second CT scan.


• less than 24-hours later i got a personal call from the ENT.


• surgery to remove the adenoids is in our near future. :(


• 7-10 day recovery, and more unpaid time off work. blah.
  

we found this out the day before spring break---AND, the day before her second dental procedure to extract a tooth and place a space maintainer appliance.

i just didn't have it in me to tell her. i mentioned it casually to a family member, in her presence, just two days ago but didn't call it surgery. but instead a procedure. she hasn't made the connection yet and hasn't asked about it.

she's terrified of being put to sleep, and she's seen her sister go through this surgery already. not even sure how to break the news.

Edited to Add: the adenoids being enlarged are completely unrelated to her headaches and migraines and removing them isn't expected to decrease the frequency or severity of them. so we still have neurology visits on the horizon.....one as soon as tomorrow.

maybe dr. sally will come to my rescue and come visit her prior to going back to the surgical suite. maybe? i can only hope. because she quite likes dr. sally.

i'm convinced that dr. sally (the dr. who performed her dental procedures) is an angel sent from Heaven. not even kidding. ashlyn has taken a liking to this woman and finds her irresistible. we think she's the bee's knees. so kind, and patient, and just delightful to be around.

dr. sally asked ashlyn if they could have a picture together so she could use it in a presentation to the dental residents to discuss and advocate for special needs patients needing sedation for dental procedures. of course, we agreed.

when she called later that evening to check on her and see how she was doing, ashlyn asked if they could be email penpals. :) dr. sally said "of course!"

so, we spent the first day of spring break at Children's Hospital with dr. sally, then came home and laughed at ashlyn's inability to hold her own head up while still looped up on the sedation meds. i so wish i knew how to share parts of the video. you'd all be smiling.

now that that's out of the way, i can continue on to sharing the next few days of spring break. coming soon.........

(in the meantime, any ideas or books out there on how to talk to an older child (with high anxiety) about surgery that you might suggest?)

she amazed us all.....

and we have dr. sally and nurse debbie to thank for it. seriously, i'd be very confident in daring anyone to find a dentist and hygienist more compassionate than these two women.

my sweet ashlyn had the first of many dental/ortho visits yesterday. we chose, a year ago, to transfer her dental work over to the hands of the amazing staff at Children's Hospital rather than continue with her regular pediatric dentist. it had nothing to do with her dentist, but everything to do with how well the hospital staff interacts and deals with children having special needs.

this time daddy got to accompany us, which is a rare treat considering he's usually tied up with something called a full-time job. pffffft. she's a daddy's girl, for sure, can't ya tell?

you'll have to excuse the cruddy photos---they were all taken on my phone.

anywho......Baby and Max joined her for the adventure and kept her feeling safe and secure. Baby has been to every doctor/hospital visit this kid has had. i should definitely do a layout with all those pictures. (in my free time.........ha.)

ironically enough, she ended up in the puppy room. which means nothing more than a procedural room with posters and framed pictures of puppies covering the walls and bulletin boards....and even a handful pasted on the ceiling tiles. :)

because of her sensory issues, we mutually decided that all her dental work for the near future will be with sedation. not anesthesia, just sedation.

she did well with everything they talked about prior to starting, but started to fall apart when they left the room to get her happy juice.

she was scared she'd be put to sleep and the girl hates.......i mean, HATES, to go to sleep.

so she had a little anxiety that was calmed by distraction from the technology and a little pep talk from the attending physician. they promised her she would not go to sleep.

she needed and a little cuddle with Max and a reassuring word from daddy first.

she was asked who she wanted to race while drinking her happy juice....me or doug. she picked me. so when the doctor left the room to get her happy juice, she started stretching her legs and arms.

when asked what she was doing, she said "stretching so i can race mommy!" she thought we were going to literally race a lap around the facility or something. LOL. when we explained she had to drink her happy juice faster than me, she changed her mind....."ohhhhhhh man! i'm not gonna race mom. she's an awesome pill-taker, she'll definitely beat me."

so what would have been a huge meltdown at home (drinking grape, gritty happy juice--both negative sensory triggers for her), turned into racing daddy albeit with a disgusted look on her face, but doing it anyway, because dr. sally and nurse debbie were rooting her on.

after the procedure we were told that Dr. Sally worked her magic and "painted" a snowmen, hearts and a puppy on her three of her teeth while ashlyn kept asking why there were bookshelves floating near the ceiling, LOL.

then we took her home where we tried for an hour or more to decipher her mumbling and then calm her crying episodes while the medication wore off. she finally gave up and fell asleep. sleeping off the meds helped tremendously. she was a handful for a while.

she woke up asking "is it time for surgery now?" she didn't remember having everything done already.

the doctor called later last evening to ask how she was doing and before i got off the phone ashlyn asked to speak with her. when i handed her the phone all she had to say was "thank you dr. sally for being so nice and gentle with me today. i'll see you next time."

this morning she asked, "when's my next appointment to have my tooth pulled?"

we don't know yet, but next time will also be with sedation to have a tooth pulled and a space maintainer appliance put in. we thought that was what was being done yesterday. they decided to do the gentle work first as not to traumatize her.

after our next visit we'll be on our way to her orthodontist consult to talk about what to do with her open bite and cross bite (which you can see in the first photo). i happen to think it's adorable, but she probably won't think so when she's 15. LOL.

all that to say.......she's making strides. and growing up. we're super proud of her for being so brave!

thank God for doctors who work their magic and make her feel like a superstar!

december daily: day 4 dear ashlyn

dear Ashlyn:
today, you were delightful to be around. you're one of the coolest kids i know, but i'll be honest, we constantly have to walk on eggshells around you to try to avoid your sensory meltdowns.

when we have a few hours of 'normalcy' i find myself smiling and thanking God for answered prayer---even if it only lasts for a little while.

after a busy day of running errands with me, you decided to decompress from all the sensory input by spending some time alone playing a game, against yourself, in your newly reclaimed bedroom. i'm so proud of you for learning to spend some time alone in your room, and for understanding that being in another room apart from everyone else doesn't mean something bad is going to happen to you. our home is a safe place for you...it's amazing to see you realize that.

what's even more amazing is how awesome you were at sharing your brand new makeup that you bought with money Grammy at the Beach sent you (& a little more from mom to make up the difference). you are usually very fearful and full of anxiety over things getting messed up by your little sister or things 'wasting out'. but not today.

instead, you sat there, patiently letting her give you a 'makeover' and reminded her politely to be gentle with your new things instead of getting irritated with her. it's like the last several years of us reminding and teaching you paid off in this one single interaction.

and even though emma has no idea on how to apply makeup, you let her do whatever she wanted and just went with it. you made me proud sweetheart.

but what cracked me up more than anything you've ever said or done was when you said....

"no emma, you're doing it all wrong!" "it's kissy lips, like you're kissing your boyfriend on your wedding day." LOL.

"not fishy lips......listen, it's kissy lips. okay?"

i about died in a fit of giggles.

you amaze me ashlyn. every day.

love, mommy

(it's simple moments like this that make dealing with a child with sensory defensiveness, so very worth all the struggles.)

boogity boo!

happy halloween my friends!


i couldn't resist scrapping this photograph right away---the quickest i've probably scrapped a photo after being taken, i think.

we took GOBS of photos over the last few days. i suppose that sorta makes up for the fact that i haven't taken any other photos in the last two months, other than scrapbooking photos, LOL.


it must be said that the Boo-Ville collection from Little Yellow Bicycle is hands down *the best* collection of products for scrapbooking your October photos i've ever seen.....EVER. and i'm not just saying that because i'm one of the Biker Chicks. it seriously, is.

just like every collection of their's, there is lots of built in texture and dimension and glitter and gloss. all of my favorite things. already done for me! it makes your scrapbooking layouts look oh-so-complicated and intricate, yet, it all falls together so easily.

add in a few more of my favorite things....sticky rhinestones, mini brads, mini-scallop borders and some hand-stitching and i've got myself a treasure!

i *adore* this layout.

it's rather unbelievable that this girl was in full meltdown mode just hours prior to this photo being taken. she's unpredictible, that one.

journaling on that journaling card reads:
For the third year in a row, you insisted on being some sort of witch. It's hard to tell from the smile on your face but we almost didn't make it to trick or treat night. Hours before you were having an uncontrollable sensory meltdown. You've been doing so well, but lately (since the increase in your chemo dose) you've been unable to adapt to situations beyond your control. The situation this time being you having to modify your costume plans with a shirt underneath due to very cold Beggar's Night weather. 46 degrees. Brrr. I hate seeing you struggle so much with the anxiety and undue stress that your sensory integration disorder plagues you with. It is stressful for all of us as a family to watch and be a part of. The sweet spot in dealing with all of it though is being able to know what we went through to deal with the meltdown and come out on the other end of it with a smile on your face. So instead of remembering all the sadness before trick or treat I can look at this pictures and remember how happy you were to be there once we worked through it all. Your smile makes it all melt away. So, keep smilin' sweet girl. I love you even when it's difficult. xoxo, mama.


i'll indulge the grandparents with way too many photos in a blog post tomorrow.

for now, though i've got to get back to scrappin' the day away! lots of super FUN stuff on the horizon! i can't wait to share.

oobleck. what is it you ask?

never heard of it? why, let me tell you.

"oobleck is a non-Neutonian fluid. this means that when a small amount of
force is used, it acts like a liquid, but when more force is applied, it acts
like a solid. For instance, one can slowly put a spoon in Oobleck, but it is
impossible to stir it quickly. Another fun activity (though potentially messy!)
is to pour a little Oobleck in the palm of your hand and watch it puddle like a
liquid. Now make a fist and quickly open your hand. The Oobleck will have formed
a hard ball from the pressure of your fist; but when the pressure is release, it
will seem to "melt" into a liquid again. "

we were introduced to this silly concoction at a playgroup when ashlyn was little and have played with it many, many times since then. it's the PERFECT rainy day (or quiet day) activity....and i'm sure you have the ingredients in your cupboard right now. if not, you should definitely add them to the list. afterall, a box of cornstarch is less than $1 and the food coloring is optional.

you'll need:
1 cup of cornstarch
1/2 cup of water (tinted with 4 drops of food coloring --optional)
1 medium bowl
a spoon

here's how you do it......
1. dump 1 cup of cornstarch into the medium bowl.

2. pour in tinted water slowly.

3. keep pouring.

4. start stirring. it will seem difficult to stir and the top appears to always be liquid.

5. play, play, play. now the fun begins. you can't worry about your fingers getting messy in this project--don't sweat it....water washes the goop right away. afterall, it is only cornstarch. try to gather up a big glob of it. roll it quickly in your hands to form a ball. got your ball? now open up your hand and watch it melt to a puddle of gooooo. fun, fun stuff!

6. any drips will look super messy to clean up because they look "wet", but when you touch them you'll be surprised to find out that it cleans up super easily with soapy water and washes out of clothes by rinsing with water.

it is so interesting--a solid and liquid at the same time. to enhance your play experience even more, you might want to go to the library and check out the Dr. Seuss book, "Bartholemew and the Oobleck."

it's also the perfect sensory experience if you have an autistic child or one with sensory issues.

emma's favorite thing to do with it was make worms......hahahhaaa.


i'll share more rainy/quiet day activities throughout the week.

happy MONDAY!

monday mornings are always a struggle around here. what keeps me going, though, is seeing this simple statement from my daughter.

the weekend is just long enough for ashlyn to get used to staying home, so then when the routine changes and it's back to school, she gets all discombobulated and it's rough getting her back on track. it kills me that she struggles so much with changes in her environment. i often feel helpless.

this morning was even more difficult since the holiday had her out of school for 5 days straight.

java diva commented in the post where we decorated the tree and asked whether that was ashlyn laughing or crying..........she was most definitely crying. it's a common sight around here, and one that i've been photographing more and more lately because it's the reality of our family.

for my new readers, my oldest daughter was diagnosed with Sensory Integration Disorder in October 2006, but more specifically, Sensory Defensiveness. her sensory meltdowns are such a daily part of our lives.

it's so difficult to explain and understand, even for me. i really don't know if i've even done a good job explaining it to family. here's the best description i've found online from wikipedia.org:

"Common symptoms of sensory defensiveness include intolerance of high-pitched noises, intolerance of overhead lights (especially fluroescent lighting); experiencing a feeling of being attacked upon being touched (especially from light touch or sudden touch); intolerance of certain types of fabrics in contact with the skin; becoming nauseated upon smelling something that does not smell bad to normal individuals; difficulty maintaining eye-contact; severe intolerance of foods due to taste, texture, or temperature; and generally becoming overwhelmed when exposed to a lot of sensory stimuli at once.

Intolerance in this context should not always be taken as unwillingness to be subject to the sensory stimuli in question; rather, intolerance is an inability to process the sensory stimuli in any way other than as over-stimulating, because the sensory stimuli provokes a fight-or-flight reaction. This is also known as sensory overload.

Sensory defensiveness can vary between individuals:
1. The senses that are problematic for one person may not be so for another. (Commonly, individuals report major issues with two or three senses and minor issues with the other senses.) 2. How easily and the way in which a particular sense bothers individuals varies (e.g. high-pitched noises may annoy someone, or they may hurt his/her ears; touch may provoke anxiety, or it can be painful).
3.The triggers for a particular sense vary between people (e.g. one person may be sensitive to the texture of mushy foods, while another may be sensitive to crunchy foods). "

so, for ashlyn, just about EVERYTHING is overwhelming in some way or another. we did do therapy for a while at the children's hospital, and she was in a special needs classroom last year, but she still struggles. and that means our whole family struggles. it's stressful and change is difficult, even when it's extra days off from school.

on days like today, i just need to look at her simple note that tells me........she's okay. and pray that we are doing all we can to guide her as parents and get her the help she needs. this parenting business is HARD.

anywho............on a lighter note, LOL...........how's about a giveaway!!!
you know the drill---leave a comment.

a beautiful mess.

Dear Wilton,
The reason for my correspondence today is to thank the product engineer (aka. GENIOUS) who thought of making a gingerbread house for every season/holiday and making them so readily available and easy to purchase. BRILLIANT idea! Definitely deserving of a raise!

You see, it's always been my family's tradition to make a Gingerbread house sometime in the weeks leading up to Christmas--a tradition we've held for nearly 7 years now. Family gathered round the table to laugh and play and create {food} art. It's a beautiful thing.

Oh......say about 3 years ago, we caught onto the fact that you could buy a gingerbread house for Valentine's Day, Easter, and Halloween! That really makes this mother of two, VERY happy. (Shhhh. Don't tell my kids, but what excites me more than decorating the house is that fact that I have a means to empty all the excess candy that comes from those holidays to a place other than their tummy. Smart, eh?) The real joy comes from watching my girls decorate and plan and use their imagination and work TOGETHER. Something about a gingerbread house, icing and a plate full of sugar......and they instantly forget their squabbles and focus, together, on one project to get their desired outcome.

So, thank you, Wilton for your part in building my family's memories, one gingerbread house at a time.

Sincerely,
Tania Willis
Domestic Engineer
********************************

so, yeah. my answer for ridding the candy basket and starting the detox from sugar overload---make a gingerbread house. if you have an abundance of candy after every holiday, my suggestion is to hit the aisles at Target, Walmart, JoAnn's or Michaels and find a gingerbread house. after the holiday they immediately go to clearance.........got mine for $1.50. actually, i bought TWO. one we used and one to be stored away until Christmas. they are usually pre-constructed and even come with icing, decorating bags with tips, and a small amount of candy.

what i love most about gingerbread house making--they actually get along.......for about an hour. working together, singing as they decorate...."what's gonna work---teeeeeeeeeam work. what's gonna work---teeeeeeeeeam work." i often will buy the gingerbread house (always on clearance) and tuck it away for a day that they are bickering back and forth. decorating a house together puts that to rest real quick.


even if you don't have an abundance of candy, it's amazing what you can do with a few things from your pantry when you add them to the mix of the candy from the kit. things like cheerios, pretzels, chex mix, mini marshmellows, goldfish crackers, sprinkles (those are always on clearance too after the holiday). emma is a BIG fan of the sprinkles. LOL.


ashlyn, loves to see just how creative she can get with the pieces that she has. "look mommy. i made a bunny!" she says bursting with excitement. "and the candy bar is a door. look! open. closed. open. closed."


i suppose it's worth mentioning, that this is one of THE best sensory projects we do for ashlyn. with all the textures, and smell of the icing (she has a major aversion to smells---hypersensitive), the mixing of the candies on the plate (she really hates for non-like things to touch on a plate), getting sticky stuff on her hands.........just all of it together helps her learn to adapt and go with the flow a bit better.


did i mention emma like sprinkles? i guess she felt that it needed even more than the massive dump before.


and the finished masterpiece is always a beautiful mess!

Back to School.

so she really started school on August 28, was sick August 29, holiday September 1, back to school September 2, which makes today September 5th. and i finally snapped those milestone first fifth day of school pictures.



i'll tell you, this transition to Kindergarten stuff hasn't been a piece of cake, at all. the earlier mornings are a difficult adjustment for her.....the rest of the morning routine is the same. i've learned that she needs lots of structure, but still some room to make her own decisions----like picking out her own clothes, how she wants her hair fixed. i personally love to see the combinations she comes up with. hey, if it covers her body.....that's good enough for me. i don't really care too much how much something doesn't match.


anywho. as i was saying, it's been a rough transition. the first day she got on the bus with no problem, she was thrilled and excited and when she came home she had a whole mouthful of stuff to say about how cool it is to have recess and sit whereever she wants for lunch. and to have her daycare friends in her kindergarten class. and her absolute favorite is getting to paint every day. after she was home, she told us she only cried a few tears on the bus, but it was okay.



the second day she was sick, the third day....she took the bus again, with a little more aprehension. i talked her into sitting in the front seat so she wouldn't get so overwhelmed with the rowdy kids in the back of the bus. it's a new experience for her to walk to a bus stop and get on a bus full of nearly 75 kids. crowded. loud.overwheming.new.



so, yesterday i took her to school myself on my way to taking emma to daycare. she welcomed the mom taxi. i just pulled in the loop and let her out to walk the path to the door by herself. she was on the verge of crying as she got out and got hugs all the way in to the school from various teachers/staff. but she told me yesterday she knew everything was going to be okay once she got a hug from Mrs. P---her preschool teacher from last year. thankfully her classroom is right next door to her Kindergarten class.

as the days go by, it's harder and harder to get her out of bed in the mornings. but today was a little different. she woke up, no crying, no fits, no meltdowns so i decided today was a good day to try to take pictures. honestly, before today, putting the camera in her face would have sent her into meltdown mode with all the other excess sensory input.

again today i let her have the decision of riding the bus or taking the mom taxi.....she chose the taxi. so she gathered up her baby----which she still goes nowhere without---and we were off. we set out to drop emma off first and then i could actually park and walk her up the path to her classroom. the kids all gather outside and have to wait until a certain time to go in the building. so, there we stood in a crowd full of elementary kids, buses coming and going, lots of chaos and i caught this on film:

and it breaks my heart. it's just a great big scary world for her. and while, yes, i know how to help her avoid overwhelming situations, and how to help her calm down from overwhleming situations that we can't avoid, it still kills me inside that i can't just kiss her "boo-boo" and make it better.

Lord, give me strength.

change on the horizon.

4 months later and i finally get ashlyn's school picture scanned into the computer. i have good intentions people.....just struggle a bit on the follow-thru.


this was taken last school year when she attended the special needs preschool.

i adore this picture of her so very much because i can see the HUGE difference in her sensory issues from the time this picture was taken (May-ish) up to today. what you don't know is that this is ashlyn's typical pose when she's totally unsure of herself and what's going on around her. her "embarrassed stance". which i imagine was the case when it was picture taking time. i had no idea that it was picture taking day that day, so i didn't have a chance to explain to her what to expect. she doesn't like surprises at all. but looking back, i'm thankful for not knowing and not having the chance to warn her because this picture shows progress.

and boy has she ever made progress.

at the beginning of the year, i sat down with teachers and psychologists and counselors at the school and put together an Individual Education Program (IEP) for ashlyn. it's a specialized plan that is put together for students with disabilities.

it started becoming more and more apparent toward the end of the school year that she had made huge strides in the way she reacted to different sensory input. since she was on an IEP at the special needs preschool, i had to meet with the teacher and various other educators (back in June) at the school to review her objectives to see where she was in terms of meeting those objectives. at the meeting i was handed this:


she completely mastered every objective we had set for her at the beginning of the school year! and i could tell it just by the change in her behavior at home as well. at the meeting with them we were asked to sign off saying that all objectives had been met and they will be entering her into Kindergarten as a TYPICAL child. meaning she won't receive any special services at the Kindergarten level unless we notice her struggling again, then we'll have to start new again.

many, many questions were asked by me during that meeting because even though she has "mastered" those skills in the classroom setting, she hasn't exactly mastered them at home. the biggest skill we still struggle with at home is her being able to follow a three step command, such as: get your pajamas on, hang up your towel and brush your teeth. somewhere between the instruction and taking 2 steps into her bedroom, she gets lost. she still has problems with things like pick your brush up off the floor if there are more objects than just the brush on the floor. she can be staring right at it and still not be able to process what she is seeing to single out the brush. it's so frustrating to see her struggle so much with sensory processing.

she currently has math skills of a second grader and reading at a first/second grade level. she's a brilliant child, academically, but she has huge struggles with social interaction in a classroom setting. she'd much rather cling to the adults, than initiate peer-to-peer interaction.

i left that meeting feeling elated and defeated all at the same time.

totally elated because of all the progress she made, but defeated thinking about what kind of struggles we might have once she's in school a full-day, every day with double the amount of kids in the class. since she is going to be an older child entering kindergarten there is a concern. she's well advanced academically........will they be able to keep her busy enough? will her social struggles balance out the academic advancement?

i'm excited for another year of school to watch her grow and learn and overcome her sensory struggles at an even higher level. but at the same time i'm a little bit nervous about how she's going to process this new change as she heads back to school with all new classmates, a new routine, a new teacher, new bus drivers, a new schedule. it's all a bit overwhelming for her and i wish i could just snap my fingers and make everything better.

P.S. hey ally....do they have early intervention to get her back on an IEP if she's struggling? someone mentioned a 501 to me the other day. what's that?

p.s.s. 9 more days 'til she's a full-time kindergarten student. yikes!