the shelf OCD begins.

we have a lot of walls in this new house, and not only are we used to small spaces, but we're on a tight budget.  so i've been working on some things to fill up the wall space and get some color going on.  i actually really like white walls, then i can do whatever i want with them and change it often.

here are some shelves my friend andrea and i put up last night.  you remember those signs that say "STRADER FAMILY, EST. 2002" that were all the rage during enrichment nights about 5 years ago?  well i have two of them and decided that i wanted to make them into shelves.  so i bought fabric that was on clearance and covered them, then bought inexpensive brackets  and wha-lah!  shelves.

 

everything on the shelves i already had and was either on clearance from somewhere or from a yard sale.  i like the eclectic look.  nothing goes together so it goes together, you know?  

anyway, just because i love finding out where people buy their stuff, i'll list it here in case anyone is interested.

{flower vase-- i've had it since 2002

flowers--joanne's fabrics, clearance}

old fashioned bird spice holders--yard sale

trivet--is that what it's called?  whatever it's called, normally it goes on your stove to hold your spoons while cooking--anthropolgie, clearance}

{b&w picture frame--target, clearance

b,l, s letters--target, clearance

cocoa canister--yard sale

books--old books, with the covers taken off}

{owl pillow--yard sale

fake plants--a gift from tei pan trading

orange mug--pier 1, clearance

the living christ--gift when we were first married}

{clock--walmart, clearance...i think i'm going to take it back & exchange it for a blue one though.

measuring cups--anthropologie, clearance}

so there it is friends!  fairly easy, cheap and helps fill the space.

{and a shout-out to the patience of andrea and ben who helped me mix & match all of the stuff on there.  that's where the OCD comes in.  just wait until i blog about the next shelf!}

bedhead + minnie mouse ears = magic

one day down, 19 more years to go.....

so caleb's first day at school went off without a hitch.  

aside from the fact that i was stressed out because i was running a little behind & didn't want to look like "that mom" on his first day.  all of the rest of the days i couldn't care less, but this was his FIRST DAY.  no curlers and green face mask for me standing and waving goodbye in my long nightgown, no sir.

ben didn't have class until a little later so he was able to come with us, and i was grateful for it.  there's limited parking at the school and we had to park pretty far away in order to drop him off.  luckily we were prepared with a stroller, so we strapped leah in and took off.

at the kindergarten gate we took the official pictures:

 

 

and caleb didn't hesitate for a second, taking the hand of the lady helping him to find his class's line.  we watched him line up, and i will admit to sticking the camera lens through the gate and continually snapping away.  

then his teacher saw me and bless her, told him to look up and wave.

and he did.  

 

then marched on in, in front of a little boy who kept grabbing the side of his backpack.  caleb didn't seem to mind.

 

oh, my heart.

i'm not going to lie and say that it wasn't hard.  

i immediately had flashbacks of caleb through the years.  rocking with him and singing to him every night before bed, watching him take his first steps with tears in my eyes.  all of our conversations and time outs and rewards and laughter.

he's so grown up.

and even though it's the way it should be, 

it's not the easiest thing in the world i've had to do.

i love this kid so much.  i love his personality.  

his sweetness, his silliness, his bossiness, his fighting spirit, his good heart.  

i know he's going to do great.

i surprisingly didn't cry, as we turned to walk away.

i did however, when we got home, go upstairs and say an extra prayer.

then came back downstairs and made myself a banana split with mint chocolate chip icecream and hot fudge at 9:30 am  {ben had one too}.  

so i guess my icecream got the emotion instead. 

when i went to pick him up he ran to me and gave me the biggest hug.  his teacher said that he did great, he earned one of the "good job" stamps for the day and only needs 9 more in order to earn a treasure from the treasure box.   he told me how his teacher had introduced him to the class and how he had already made a couple of friends. and then he showed me what he had worked on.

caleb can read fantastically and knows all of his letters but has been a little slow with the writing part.

i thought this was the cutest thing.  his first schoolwork, coming home.

"the cat is fat."

i'm going to keep it forever.

well the hurdle of the first day is over.

what's next?

and am i going to need to buy more icecream for it?

oh, the places he'll go.

so tomorrow, this fella

is going to start school.
after waiting for the move, then the MRI, then the results, then the immunizations, then for us to all get well after the utah plague, then the registration, then hunting all over kingdom come for all of his medical records.....

he. is. READY!

he's extremely excited and i am too.  i think it will be so good for him and that he's going to do great.  it doesn't mean i won't miss him, and that it isn't hard to hand him over to "the world" now.  but i have felt for a long time that school is something that will be good for caleb.  plus after reading an entire reader level 1 book to me yesterday and only getting stuck on two words, i think he is about 6 months from surpassing my skill level.  just kidding.  sort of.

it's a new chapter here at the strader house.  life just keeps moving forward.

and it's good.

you can bet your bottom dollar that there will be some pictures taken tomorrow.

the deepest secret that nobody knows.

here is the deepest secret nobody knows
(here is the root of the root and the bud of the bud
and the sky of the sky of a tree called life; which grows
higher than soul can hope or mind can hide)
and this is the wonder that's keeping the stars apart

i carry your heart (i carry it in my heart)

 --E. E. Cummings

dec '09


***for the entire poem, click here.

the diagnosis.

a few days after caleb's MRI, while my sister and i were driving back to arizona with the kids, ben called to let me know that the results of the spine section of the MRI were in. 

the cysts that are on his spine are still there, but not big enough to need surgery.  we will continue to keep an eye on them.  he does not have a tethered cord, and will not need surgery for that either.  phew!  the neurologist had a family emergency and will be getting back to us with her section of the MRI in the next couple of weeks, but we were grateful for the good news.

as far as the diagnosis, it looks like he is being diagnosed with cerebral palsy, which is why we initially went to shriner's hospital when caleb was 10 mos. old, to see if this was what he had.

cerebral palsy {CP} is not always an easy diagnosis.  it's not a missing or extra chromosome.  it's not found in a blood sample.  it's what has been explained to us as an "umbrella" diagnosis, which means that there are a lot of symptoms that together add up to be CP.  caleb has had many of these symptoms:  low birth weight, failure to thrive, seizures, excessive vomiting, excessive fussiness, gestational problems, chronic constipation, clonus, hypertoned or hypotoned muscles, spasticity.

CP can occur at birth or during pregnancy, where either the baby is not getting enough oxygen or has had some type of a stroke and it causes neurological damage.  it can also be caused from infancy up to about age 3 for various reasons.

in less severe cases, such as caleb's, it isn't obvious until the infant reaches around 6-9 months when gross motor delays become more clear.  it was at this time that we first noticed caleb's physical delays.  he rolled over right at the average time for babies and sat up.  but when it came to crawling, or pulling up to stand, or cruising or walking....he fell significantly behind.  

instead of crawling caleb scooted on his rear end, and he didn't walk until after he had turned 2.  this was also after a lot of physical therapy, and walking with a walker, and then having orthotics made for his feet.

he also has a more rare form of muscle spasticity.  where the majority of CP kids that i have met or seen, or read about, their muscles are extremely tight on the backs of their legs, usually their calf muscles.  many walk on their tip-toes because their muscles are so tight that they physically cannot set their heels down.

caleb is the opposite.  his muscles are extremely tight in the front of his legs, so he actually has a difficult time pointing his toes and is extremely weak when it comes to walking tip-toed.  he doesn't have the ability to bend his feet the way he should.  but to look at him, he looks completely normal except that he's on the tiny side.  and it isn't until you watch him run or try to kick in the swimming pool that you can see that something is just a little bit "off."

so that's why this diagnosis took a little longer.  it was not cut and dry for caleb, which has been the pattern of his health since day one.  he likes to keep us guessing.

luckily, CP is not a degenerative disease.  whatever type of damage that has been done, is done.  then it just comes down to maintaining and working with what has happened and trying not to do any more damage by allowing certain muscles to remain weak while others are in a constant state of flexing.

as far as our lives changing with this diagnosis, it most likely will not.  what it will do is allow caleb to qualify for anything he might need as he continues to grow and with the physical struggles that he faces now and whatever he will face in the future.

i think the weirdest part for me is to finally have....an answer.  a label.  for so long, through the seizures and the testing and the constant screaming and the vomiting and the nagging in the back of my mind that there was something wrong, we were told that there was no answer for him.

and so i had resolved myself to accept what we were told and just let him be.  let him grow.  let time tell us that either the specialists were right, or they were wrong.

it isn't about proving anything, or blaming anyone.  it's just been part of the journey of caleb and i believe that things have turned out exactly the way they needed to.

i don't know for sure that diagnosing him at 10 months old would have changed the way i mothered him, or the way that i looked at him but i can imagine that it might have.

to everything there is a season.  and this is the season of diagnosing and moving forward again.

we're extremely grateful that caleb's form of cerebral palsy is mild in comparison with what could have been.  that neurologically he is not just great, but fantastic.  he has been through a lot in his 5 years.  he has faced daily physical pain that i have not had to face and that i do not understand. 

i remember the baby blessing that was given to him by his dad, when he was only a couple of months old.  it was short, and direct.  there were a lot of things not said during that blessing that a mother wants to hear.  about a mission and a wife and future children.  but what he was told was that he knew he was coming to earth with physical challenges and that he would be given the strength and ability to overcome them.

his struggles are not yet over but i am hoping that the worst is behind him.

i look at him still, with all he has been through.

i watch him hang on through all that he has been given to overcome.

i watch him climb hurdles all of the time.

and i watch him smile, 

and make goofy faces,

and laugh 

while he sits on the top.

and so, that's just what we will help him continue to do.

in the family room....

here are some pictures of our family room on the main floor.

{notice the wipes container ready to fall out of the basket in 2 seconds?  fabulous.  
planning on adding some mismatched orange, yellow, green & brown 
pillows to the couch when the budget allows for it.}

it's a big great room with the kitchen on the other side.

bright, simple, open.

just how i like it.

so apparently, the 5th time is the charm for MRI's.

well i was trying to wait to write about caleb's MRI because i wanted to upload a couple of videos from the experience that would provide some comic relief, but....clearly i don't know what i'm doing in the "upload your videos & put them on blogger" department.

so, instead i'll just do the same ol' boring pictures-and-writing post.

1)  waking caleb up at 4:45 in the morning to provide a turkey sandwich for him wasn't the easiest thing in the world, but i would definitely do it again if i had to.  he ate about a quarter of a sandwich, part of a pop tart {i just started pushing any food after he didn't eat more of the sandwich} and drank part of a pediasure.  then it was back to bed for us both.

2)  i think that was what made the difference in him not starving until 1pm.  he was able to drink until 11am, and also have popsicles so he pretty much thought he was hot stuff eating as many popsicles as he wanted to until 11.  the day before he had picked out superhero popsicles to give him extra power for the MRI.  i didn't hear one complaint about food, or liquids after those had to be cut off.  he was a serious trooper.

3)  before we left for utah, ben had wanted to give caleb a priesthood blessing, but during all of the craziness we had forgotten.  so luckily, my dad gave both caleb and i blessings.  i was so grateful to be in a home where that was a part of this experience.  there is just something about hearing again that God loves you, is with you and will provide comfort that brings peace like nothing else.  so thank you dad.

we arrived at the hospital, super caleb and i, and got checked in.  just a few minutes later my fabulous SIL allison, who is a nurse & has been a big support during all of caleb's physical issues, showed up for moral support.  i was grateful for her comic relief and her generosity, and also her medical background.  she's one of my favorite people in the world.

{super caleb and aunt allison}

after being checked in we were taken to our temporary room where the IV was going to be administered.  as nervous as i had been the night before, i felt a lot more calm about it as we got ready for it.

i had told caleb everything about the MRI before we had arrived at the hospital except for the IV part.  i knew he would be anxious and hyper-focus on that and it would make things worse.  but when we got in our room, i talked to him about it.

"okay caleb, there is one part that is going to be a little bit hard.  in order to go to sleep and take that long nap we talked about, the nurses need to put some medicine in your body.  and the way to put the medicine in it is through a tube called an IV.  and it's kind of like a shot, and it will go in your hand and and yes it's going to hurt a little bit."

immediately he started to panic a bit.  

"NO!  i don't want a shot!  i don't want to do this!"

but i said,

"hey buddy, i know that this is hard but you are strong enough to do this.  i'm here with you and aunt allison is here with you, and you can squeeze my hand as hard as you need to when it hurts.  but it will only be for a minute, and then it will be over.  so you're going to need to use all of those super powers from your cape to be brave.  you can do this.  you are strong and it's going to be okay."

i do affirmations with caleb a lot.  and they actually work.  and it did this time, where he calmed down and just said quietly, 

"okay." 

the hospital gave caleb a little "buddy" which was a doll dressed in a hospital gown, and he was able to help give his buddy an IV.  

i highly recommend doing this for any kid {who's old enough to understand} having to get an IV because it was a step-by-step that caleb was able to have explained to him.  then he sat in my lap with his head against my chest and his arms wrapped around me, watching a movie to one side, but unable to watch what the nurses were doing on the other.  they were awesome though, explaining things as they went.

"okay caleb, you feel that cold wetness on your hand?  that's just me washing it, just like we washed your buddy's hand.  now we're going to put in the straw....{also known as the "needle" but i guess straw was a more kid-friendly term}"

i braced myself and held him close.

but he didn't even cry.  he yelled twice, in a "ARRRGH!  AAAARRRGGGH!" kind of way, and then it was over.  and they explained to him that now they were putting on his bandage like his buddy now had and the worst part was done.

{just after the IV.  he looks worse than he actually was}

whether it was the cape, the buddy, the pep talk beforehand or the priesthood blessing i don't know, but i'm guessing it was the combination of it all.  he did great and didn't cry one tear throughout the process.

he was given a different sedation this time from the previous 4 times, one that would make him more naturally fall asleep instead of all of a sudden BOOM!  he's lifeless and limp.  

{waiting for the anesthesia to kick in}

so we laid him on the bed for the MRI, and he was administered the sedation meds.  i stroked his forehead and hair, and talked to him until he fell asleep.  

and again, i don't know what it was this time, but i was calm and didn't freak out when they wheeled him in the room.

since i had been fasting up until that point and it was about 2:30pm, allison and i went to get something to eat while the hour-long MRI went on. when we were done we waited in the room until caleb was finished and we went with him to the wake-up-from-sedation room.  {and yes that is its official name.  not really.}

{zonked out.}

he slept for a long time while allison and i kept ourselves busy being dorks and making videos.  finally he woke up, and again...did so great coming out of the anesthesia.  he was really sleepy and said several times that he was "confused" but didn't scream and rage against the machine like he had the other times.  {or like the girl 3 beds down from him was doing.}

{sleeping prince awakens}

we slowly gave him some juice & cookies to make sure his stomach was okay, then took him to the bathroom, waited a few minutes more and then were able to get ready to go.  

 {being fed oreos by his lovely aunt}

the whole thing took about 4 hours and i was extremely grateful that it went smoothly.  

the rest of the night he took it easy, resting for the most part on the couch and watching movies.  i was so proud of his bravery and ability to handle things that scared him.

{a little confused, but ready to go home.}

to not overload any readers with my ability to shove too much info in to this,  i'll write about his diagnosis in my next posting.



***also a huge shout-out to the staff of PCMC.  we love you!

and if you're interested, here's the posting i wrote from caleb's last MRI.

in leah's room

aside from a couple of things that i want to add, here are some pictures of leah's room so far.

it's kind of a work in progress, like most of the rooms, 

but i think it turned out nice.

i became more focused on getting things out of boxes and put away than getting my craft on 
{and obviously ironing her curtains},

but i do have a couple of ideas when things slow down around here.

most of all i love to watch her play in it.

oh my goodness sometimes i feel like my heart is going to burst open

with how much i love this little girl.

 

did i mention she's officially 18 mos?  

guess i'm going to have to do the update on what she's doing now.

***adorable "leah" blanket made by her amazing aunt allison.  i keep telling her she should sell them, each one she makes is so cute & individual & so soft.  thanks again, al!  even though you were okay with it, i told you that i wouldn't allow her to poop or barf on it.  :)


***thank you for your comments about caleb's MRI. some of the results have come back and luckily he is out of the woods for surgery.  as far as a diagnosis, it looks as though there is one now.  i'll write more about it as soon as i wrap my head around it.

super caleb.

this weekend caleb has been seen around the streets of utah and up gallivanting around swiss days in his superhero cape.  he has insisted that we call him super caleb and because i love him so much, i've done it.  i think he really believes that with this cape on, he can do anything and is braver and stronger than anyone. 

and tomorrow super caleb will make another appearance as he goes to face his 5th MRI.  

i'm not sure yet if it's easier because he's older and i can explain what's going to happen to him, or if it's more difficult because what i explain to him causes him to be more anxious.  i don't give him all the details, but just enough to know what to expect.

however it doesn't help that i'm nervous about a couple of things.

1)  he can't eat past 5 am, and the test isn't until 1pm.  so i explained to him that he's going to be extremely hungry and asked if he wanted me to wake him up before 5 to eat.  his reply? 

"absolutely!  i'd like a turkey sandwich, please!"

so i will be stumbling out of bed at 4:30 to see if he is really conscious enough to eat the requested turkey sandwich.  but i know that tomorrow will be starting off difficult because of the non-eating factor.

2)  the IV.  i don't know what it is about IV's, but just thinking about them makes me sick to my stomach.  when i have had to have them i can't watch, and it takes all the strength i have to muster up my inner chi to take my mind somewhere else.  but this time, i have to be brave for caleb.  i have to hold him and tell him it's going to be okay without throwing up on him or passing out.  maybe i'll borrow his cape for IV time.

3)  the sedation.  caleb has been through multiple tests and a lot of them have been really hard to watch him have to go through.  but nothing has brought me to tears like having him sedated in my arms.  there is just something disturbing about it, having him be awake one second and then completely limp and lifeless the next.

i know there are worse things that he could be going through right now, but i also know that this is a hard thing to go through, and it's a-okay to state that. 

i look at him and am so grateful for all that he continues to teach me. 

so for tonight i'm going to be saying a lot of prayers and affirmations that not only will super caleb be strong enough to get through a difficult day tomorrow, but that i will be too.