Happy Holidays!

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All Yoga All the Time

that's how it feels anyway.  mama's new job started and we are all adjusting.  Wyatt is at home with a wonderful nurse/nanny one day a week and he still attends "school" the other two days.  Wyatt has adjusted very well and really loves Tracy (his n/n).  dada has adjusted well too - he has a little break in between coming home from work and Wy-duty to work-out or write or what ever floats his boat.  mama is adjusting ok too.  the first week she had a few breakdowns, actually stalked her own house, driving by and trying to see any action from the windows.  but now, three weeks in, she is learning the ropes at school and more comfortable with someone else helping out at home.

there seems to be a lot of guilt that comes with a mother deciding to work out of the home, especially when that home contains a child with special needs.  we are lucky enough to be able to afford for me not to work.  and i've considered it for sure.  but i have found working to be like a therapy for me (although not a replacement for regular therapy of course!).  granted, my work is teaching yoga to children (and adults), so (i think) it's a low stress, very fulfilling job.  i have learned so much about myself through the process of developing another part of my identity, i've learned about how to talk to others about my son and how to share my experiences in a helpful way.  so anyway, maybe part of me still feels a little guilty about leaving home to work with other children.  maybe that's why i wrote all this out.  but the more i think about, the more i know that it has made me a better mother to my Wyatt.  and that's all that counts!

here is a little picture of heaven:

All Things Halloween!

Fall is absolutely my favorite time of year.   my family indulges me with numerous trips to the punkin patch.  i think they are beginning to enjoy themselves as well.  Wyatt let the nice lady at the face painting booth draw a smiley kitty and even acted the part.  the day was so bright and beautiful, i don't think the poor kid could open his eyes!  

Wyatt threw a little Punkin' Paintin' party with a couple of our close friends.  all the kiddos are growing up so fast.  first you have dada and Wyatt waiting for our guests.  then the dinner group and the artists in residence... 

finally, i know you're wondering who on earth could be hiding beneath that adorable monkey hat?  

"It's ME!"

could the cowboy be any cuter??

 Wyatt seemed to love dressing up and visiting a few neighbors for trick-or-treat.  it was a chilly night and the monkey costume was a welcome fuzzy blanket for him.  all for now - enjoy the weather! SNOW is on the way!

Blast from the Past - Summer Fun

i figured you might want to check out a few pictures from our summer fun.  if you are a follower of The Littlest Cowboy you might know that our summer, especially August and September were really tough.  we did have some good times though and i'm glad we were able to document them!

first up - Wyatt's sister Anna visited for a week long sleepover!  it was super fun.  and as you can see, Wyatt loved having another kid around.  she was sweet with him and brought him a lovely present - a cuddly penguin.  she is a thoughtful little 5 year old.  at one point she told me, "you know that guy who is in a wheelchair but is very, VERY, smart?  I think Wyatt will be like him."  i'm pretty sure she meant Stephen Hawking.  a mother can only dream... :)  

next up - a little trip to the mountains for the family (our first and only family vacation to date, a 3-day weekend to the Poconos for a family reunion).   this was Wyatt's first experience in the pool.  he enjoyed it (though you can't tell from the expression on his face) and we even got a season pass to the pool in our neighborhood.  we used it a ton in June and July, but when Wy got too sick in August, not so much.  

NEXT YEAR!

These family shots are from a trip to the Pittsburgh Zoo.  they have a evening called "Dream Night at the Zoo".  it's a chance for special needs families to explore the park.  it was packed with people of all abilities and we had a good time.  though i think Wy liked the people more than the animals! 

and here you have Wyatt with his globe-trotting grandparents.  they were back for a super fun visit.  as you can see they make him giggle.  we had a short but sweet visit with Grandpa a few weeks ago, and we miss Grammie tons.  hurry home!!

more to come, including pictures from Wyatt's birthday party.  yes, he's almost 27 months now.  I KNOW.  but enjoy these smiles for now.  they have been getting more frequent and chubby in the past month, so you know they'll be good.  love!

No More Promises

it's become very clear that i am not made out for the blogging world.  i haven't updated since Wyatt's last visit to the hospital and it's not because there's nothing going on!  i'm taking full responsibility though, and have to admit that it's because my job really picked up.
i'll toot my own horn for a moment and brag about the conference i attended where i presented the research i've been conducting.  that work kept me very busy.  and right now i'm procrastinating and not writing the paper that should go along with it!  oh yeah, i also got a new job!  i'm super excited about it - i'll be teaching yoga and conducting research at the Falk Laboratory School !  seriously, they have a resident yoga teacher?  yes.  and i'm her.  it's a beautiful new building in the middle of campus and it just seems like the right place for me.
one of the perks is that my children will be able to go there for free - a private school in the city!  a dream!  except, wait a minute...what about Wyatt?  right now he attends a super program for super special kids.  a daycare/preschool program called Child's Way.  we love it.  he loves it.  they take care of him so well.  but i know that 3 years old means transitions to new schools and so we are already dreading thinking about the where's and how's and even the if's.  and we are getting close.
what i wouldn't give for my Wyatt to go to this school.  my new boss, was sweet and pointed out that special needs kids are accepted and cared for, even those that require nurses...but, i tried to explain.  he's really special.  and i've already decided that i don't want him to be the most special.
so i guess i'll be the one to go to the private school in the city for now...
and i'm not going to promise that i'll post pictures soon.  apparently i'm not good at keeping that promise!

He Did It Again!

that's right, the littlest cowboy has done it again!  Wyatt has made a full recovery from our latest trip to the icu. his diagnosis was severe GERD.  the solution was to change his G tube into a G-J tube.  and he hasn't vomited once since Saturday Sept 4th!  we are holding our breath, as we always do, hoping that this streak of good health holds out for a longer stretch.  the J tube requires a different feeding schedule, he is on a pump for 20 out of 24 hours a day now.  honestly, i find it easier than planning around the 6 daily feedings that we were doing with his G-tube.  we are able to be a bit more spontaneous, meeting dad at the park on the way home from work, taking a trip to the local farmer's market and going for walks.
there is always a sense of mourning when we take another step away from what is "normal".  in the beginning i was very resistant to most permanent medical interventions, such as the g-tube, the j-tube and the fundoplication.  but knowing that Wyatt is more comfortable afterwards makes all the difference.
thank you to everyone out there who sent text messages, emails, phone calls and comments on the blog.   we appreciate all of the support!  and now that i'm not mopping vomit off of every surface in our house, maybe i'll have some time to post some pictures on this darn blog!

A Message of Thanks (from the inside)

it's no secret that i go to see a therapist a couple times a month.  being a therapist, it was hard to deny that my (our) situation would certainly benefit from a trained third party's experienced views.  and she has been amazing. and it has definitely helped me through some rough spots.  one topic that comes up from time to time is support.  support from friends, family, how ben and i support each other. i'm sure it's no surprise (especially to anyone who has experienced a tragedy, or something comparable) that when a challenging event is presented, many times those close to you go running for the hills.  and when my therapist asks how we are doing on the support side of things i have a lot to tell her.

and its the truth, ben and i have experienced something much different than what we've heard is typical.  we have marveled at the amount of support that we are offered by those close to us.  and we couldn't be more thankful. so this post is to say a quick word of thanks to everyone whom we hold dear.  and there are a lot of you.

Wyatt's grandparent's, far and near, are loving, accepting and sometimes even smothering.  in a good way.  they dote on him, spoil him and think everything he does is amazing.  just as grandparents should :).  Wyatt's aunts and uncles do many of the same things.  stopping by the house for an hour or two to play with him while we run an errand. they are known to outfit him in some pretty cool gear and let him stay up way later than he's allowed when mom and dad are home.  our friends are amazing too.  we are touched by offers to come learn Wyatt's needs, to sit with him, to be involved.

we love you all for it.  we love that you read about his diagnosis, that you ask questions, that you talk to us about how hard it is.  and we love that you bring your kids to play at our house, that you buy him carefully thought out gifts that he can enjoy.  we love that you send emails of support, that you don't hide from our difficulties and that you share yours.  we love you all for it.

and a surprising, but no less touching, gesture, the one that really got me thinking about how wonderful everyone is, was coming home from the hospital for a quick shower yesterday to hear the sounds of yard work being done.  no biggie, we live in the city and sometimes when the neighbor is string trimming (fancy word for weed whacking) in his yard it sounds like its in our yard.  but, wait, it IS in our yard.  i walked out the front door to find our 60+ year old neighbors cutting our grass and even sweeping our sidewalk.  'we know you have your hands full' they say.  i wanted to cry.  they didn't know we were at the hospital.  they thought we went away for the weekend.  and they still decided to help.

so when the therapist asks if i have enough support.  yes.  i think i do.
 

Life on the Inside

here we are, again.  back at children's for the foreseeable future.  wyatt's vomiting and respiratory problems became unbearable for him (and us) through the night last night and so we packed up and have parked ourselves in the PICU.  i am already sick of the PICU.  don't get me wrong, the staff, docs, nurses, therapists, social workers, everyone, is fantastic.  but i am tired.  and so is ben.  and so is our sweet little cowboy.

his battle with the vomit has become increasingly challenging over the summer.  he had a fundoplication done (to stop the vomit) in April and is worked for hmmmm, about 2 months.  then back at it.  he had adenoids out a month ago, in hopes of decreasing airway obstruction and guess what?  he snores worse than ever.  hmph.

so we had planned for a voluntary admission on Sept. 8th to get these issues sorted out.  all the tests condensed into a 3 day hospital stay.  but we didn't make it.  and here we are.  saturday of a holiday weekend and you know what that means.  no one is here to do the tests.  double hmph.

please send a large helping of love and healing thoughts to little wyatt.  he is struggling, but still his smiling self.

Yes we are home

and boy are we spent.  we actually came home a week ago.  Wyatt is doing very well.  he had been snoring extremely loud for the first several days post-op, but is breathing much quieter now.  seems the congestion is still present, and i'm wondering when he will ever recover completely.  but for now we are pleased with how far he's come.  it never ceases to amaze me that the "easy" procedures are so darn tough.  i did actually expect this to be easier.  Wyatt's mommy and daddy are still trying to catch up.  5 days in the icu does NOT do the body good.  i've ended up with "walking pneumonia" and am trying to figure out a way to get healthy.  there's got to be one,  right?  well, for now, enjoy this smiling face, and SOMEDAY, i will get more pictures up.  soon.  really.

More Than We Bargained For

we are going on day 4 at icu.  Wyatt had his adenoids out on friday.  we knew it would be a longer recovery and hospital stay than doctors predicted.  but not in the icu.  and not THIS long!
overall - he is doing ok.  it's just always about the breathing.  as they tell me, the ABC's of the icu start with airway and that is Wyatt's most complicated issue, lately and always.
after getting adenoids out, all kids have swelling.  since Wyatt's airway is a little "floppy" the swelling has taken his usual issues to a whole new level.
today, he ripped out the IV (that was in his NECK) and then screamed until the attendings took out the nasal trumpet that has been in to help expand his airway.  chaos ensued, after 17 sticks they finally placed a new iv (in his SHOULDER). and reinserted the wretched tube int his nose.
he has been extremely fussy and so that isn't helping matters either.
so anyway, we have been getting by, nurses and docs are pretty great here and we have an army of folks that have been coming to spell us for a bit of time.
so that's the little cowboy update.  send us good vibes in hopes of getting the heck OUT OF HERE!

Excuses, Excuses

here it is, smack dab in the middle of a busy summer and i've posted only once!  YIKES!  well, as many busy moms know, especially us moms of super special kids, when we're on a mission, DO NOT get in the way.  and my mission over the past 2 months has been to get the little cowboy through the summer *healthy* so we can have a rootin', tootin' good time at his 2nd birthday rodeo!  and did we ever!

now, it hasn't been all baking and decorating for the last 2 months.  we have had some other adventures.  such as  traveling (a trip to the Poconos for a family reunion, Wyatt's first weekend get-away), visiting family (Grandpa and Grandma Giovengo are visiting for the summer from the exotic country of.... Albania? :) and  friends from all over (the wild west! it's Wyatt's dream to live in Tombstone, you know.)  and we've had some fun trips to the National Aviary, the Greenfield Pool ;) and of course Wyatt's vacation home at Grandma and Grandpa Northrop's house.  In sunny Wexford.

health wise, we've been doing just ok.  Wyatt has not had a seizure since March (KOW).  he has been dealing with lots of respiratory issues.  we placed a lot of confidence in the fundoplication, and it just hasn't been as helpful as we had hoped.  there are still daily episodes of vomiting.  bad vomiting.  it's a yucky cycle.  congested, gagging, vomit, aspirate...rinse repeat.  but, on the bright side, the kid has finally made it into the 25% for height and weight!  (and we're talking about a kiddo who never made it past the 3% until the last check-up!)  we are hoping that an upcoming removal of adenoids will help as well.  but who knows.

but, developmentally, Wyatt is doing great.  for Wyatt.  he has become an interactive kid.  giggling with us, when we tickle him.  using "yes" and "no" buttons to indicate when he wants to play, read, etc.  throwing little 2 year old tantrums when he is tired. overall, just communicating so much better.  i have even heard him say "ma" on more than one occasion when looking right at me.  and i don't care if it is an accident.   we play in the pool , go down slides, run in the tripped out BOB running stroller and have even braved a few hikes with the hiking backpack.  (the jury is still out on that one).  

Wyatt's official birthday party was Sunday.  it was a party with *just* family.  which has grown to over 25 people in just the past few years.  and let me tell you, we feel the love.  sing it Elton.  seriously, the family and friends that have shared in Wyatt's ups and downs over the past 2 years really do hold us up.  so what better way to show everyone we care?  throw a party!!  a real western extravaganza!  don't worry, i will be posting pictures soon!

afterwards, Ben and i shed a few tears, as turning 2 is more than just a birthday for us.  and for Wyatt.  it's a sweetbitter (better than bittersweet) reminder than our time with him may be limited.  so as we move towards 3, we will continue to focus on the positives, snap pictures (and someday post them) and share our lives with the ones we love!

HAPPY 2nd BIRTHDAY LITTLE COWBOY!!

Family Matters!

we've been gone for awhile and busy, busy, busy! lots going on - good things for the most part! Wyatt has recovered from the surgery and is doing very well. we've had a few set backs, but over all Wyatt has been doing some great things. you can see below, he's been spending lots of time with family. and that time has been happy and full of smiles.

Wyatt and his dada have been playing, swinging, and sliding....

nothing makes Wyatt smile more than a little taste of dessert!

Aunt Sue and Guido are some of his favorite cuddlers....

Grandma and Aunt Alyssa brought cousin Ava to visit! He couldn't take his eyes off of her!

Uncle Ben and Shannon match Wyatt smile for smile. What a cute trio!

OMG!

Seriously - this is getting ridiculous! No computer at home is driving me crazy! And blogging while at work?!? Well, I'd never do that.....

Just rest assured that the littlest cowboy is having some pretty awesome adventures and I am taking lots of pictures - so in a few short days (cross your fingers on that one) I will be updating in full color!

Check back in soon....!

Just Real Quick

we have been home for over a week and Wyatt has really recovered well! he is not vomiting. he is gaining weight. he is happy happy happy. so soon, once our internet is bak up and running, i will post pictures and have more time to tellyu what we've been up to!

thanks for all the well wishes!

Sleeping Beauties

as you can see, we are resting peacefully. Wyatt has been doing well. his pain seems to be managed much better this go around. he was given an epidural and with that, we've had no problems with his oxygen levels (as is often the case when we are in the hospital) and he - and daddy - are getting plenty of rest. mom on the other hand....boy do i get bored. and i'm not a napper. so i twiddle my thumbs, think of all the paperwork piled on my desk, and then go back to surfing the web and reading The Palace of Illusions.

i also have become acutely aware of what is going on in the rooms around us. and this is one of the hardest things to see. babies and toddlers with no parents at their bedsides. no one coming to visit. no one (except a few volunteers) holding them while they sleep. of course, i'm not allowed (i asked) or i would be in there in a heart beat. sweet little things. scared and all alone. it makes me thankful for my life, and grateful to have been given the chance to support Wyatt through all of these terrifying procedures and scary new people.

next post will hopefully be from home! thanks for the support everyone!

Recovering!

Thanks for the crossed fingers, arms, legs and eyes everyone! Wyatt did great in surgery today and everyone is resting comfortably in a private room. Hopefully, more updates to come, but for now, we are happy to have this out of the way and be on the road to recovery. And less laundry. ;)

Cross Your Fingers

We are heading to surgery tomorrow and *hoping* that nothing comes up to prevent it. This will be our third try since January. Every time we set the date, Wyatt decides he doesn't want to go and throws a major kink in the plan. Like a seizure or pneumonia. Little rascal. But he has been very healthy (KNOCK ON WOOD) and so I think we'll make it.

The surgery is for a fundoplication. Pretty standard procedure I think. It is one, however that we have put off in the past. Wyatt's vomiting has become unbearable. For him and for us. It's often, violent and really keeping him from gaining weight. He hasn't been losing any, but is still gaining so slowly.

SO keep your fingers crossed that he doesn't have any excitement tonight, that he makes it through the day tomorrow and he recovers. Quickly. So he can enjoy the sunshine!

Like Father, Like Son

or is it like son, like father?

lately, as wyatt has become our little boy, no longer our little baby, people are commenting on how he looks just like Ben. just like his daddy. i agree. but what is it? could it be their matching dimple chins?
their handsome green-brown eyes?


i'd like to think it has more to do with their personalities altogether.... case in point, the time i came downstairs and witnessed this little nap scene:


i do know that Wyatt loves his dada so much, and Ben is enamored with his little buddy. and i love watching the relationship grow!

All Sunshine and Smiles

amazing kids. its a tag-line i swiped from The Children's Institute. wyatt is one of those kids and this week he has proven to be a seriously AMAZING little man. he seems to have made a full recovery after last week's scare. the pediatrician told me that after she saw the lab results from the ER, she expected him to have a long stay in the ICU. maybe permanent. but he's stronger than ever, now. hungry as ever, too. and we've enjoyed spring's arrival, spending time helping dada build his compost pile and going for walks in the tripped out BOB stroller. we are all feeling great. and here's hoping the sunshine and smiles last! thanks to all for the emails and phone calls. we really thrive on the support of our family and friends. SMILE!

Adversity

we've made it to spring here in the east and it couldn't have come soon enough. my next post was intended to be this inspirational talk by Aimee Mullins. i watched it with tears rolling down my cheeks, and felt hopeful by the end that i, too, will make the best of the challenges that life has set before me.

then tuesday came. darn tues. Wyatt had another febrile seizure, but this time he stopped breathing. for a long time. crazy sounding words were thrown out in the ER, like intubate and resuscitate, call social work and other exclamations i, luckily, have blocked out. the breathing tube came out relatively quickly, and he has been breathing fine on his own for over 24 hours. we are likely going home tonight. we have been through this before. fever hits, sometimes a seizure, trip to the ER, a few days inpatient, an antibiotic, and home again. this time feels different. there are conversations about a "plan". mom, dad, do you have one? let's think about one. etc, etc.

i'm not sure i'm ready for a plan. planning doesn't always seem to work out for me. i planned to have a soccer team of kids. i planned to go on camping trips with my kids. i planned to braid their hair and play dress up. i planned to color with them and scold them and wash the dirt from their boo-boos. i know that this type of plan is different. but i never "planned" that parenthood would come with this kind of choice. maybe it will all be for nothing and it will never be put into place. but adversity like this seems too much to plan for, today anyway.

Cabin Fever

i've got it. man o man. after a week long hospital stay, i was ready for the real world. and now on top of that a week of being stuck in the house because of the snow...crazy i tell 'ya. i'm going crazy. it has been really nice having Daddy around. sometimes Aunt Goo makes the trek from her neighborhood and that's fun too. and Wyatt is handling great. sleeping in, lots of naps. what a trooper. i think he likes having everyone around! we've taken a few shots of the silliness that has kept us busy for the last 7 (SEVEN!!!!) days!

Wee, Wee, Wee...All the Way Home

actually, more like cough, barf, wahhhhhhh all the way home. but we are here. and luckily it's only a 15 minute trip! they released Wyatt last night from Children's with a few new meds and a little less congestion. not much though, he is still raspy and full of mucous (ew, too much information?), but is in a much better mood and eating better as well. i hope to keep him healthier, somehow, and make the best of a missed week of work. for now we are all happy to be sleeping at home! thanks for the well wishes everyone!

Back Again

thanks for all the comments about Wyatt's newest endeavor, yoga. we've had to put his practice sessions on hold for the past 4 days - we are back at Children's with another bout of respiratory illness. i'm not specifying the type because the truth is i really don't know if it's pneumonia, croup or whatever. didn't you ask? (you might ask) of course. it's never clear. everything is pneumonia-like, a possibility of this, a chance of that. and since Wyatt's diagnosis complicates most areas of his functioning, it slows the processes down. anyway, we are surviving. if only i could sleep at night, this would be like a vacation for me. the new Children's Hospital here in Pittsburgh is quite comfortable. a sushi bar in the cafeteria, a view of the city that anyone would pay an arm and a leg for. i have hours upon hours to kill, with no house to clean and no paperwork to complete. but since i'm dog tired i am not enjoying myself. Wyatt isn't either. he hasn't been his happy, smiley self lately and it stinks to see him so crabby. but we started him back on the full feed a few hours ago and he hasn't needed any oxygen for 24 hours....so here's hoping we are home tomorrow! wish us luck!

A boy after my own heart

as some of you may know - i am a yoga teacher. (along with being Wyatt's mom, a wife, a therapist, a researcher, a messy house keeper, and a Twilight addict. yes, she said it. even that last one is true!) so when Wyatt completely passed out during his physical therapy session in child's pose i couldn't help take pictures. i've been dreaming of the day when he would do some yoga on his own. you know i'm constantly twisting him and moving him around in yoga-like poses, but for some reason, seeing him do this just melted my heart. and it reminded me of a story my mom told me once, about a yoga teacher she had that fell asleep in child's pose while teaching the class!

here he is. my little yogini cowboy.

2010

i wanted to post some pictures of Wyatt from christmas and i can't believe it has taken so long! so without further ado, i present to you, Wyatt's Holiday Photo Shoot 2009...




aunt sue was kind enough to take the pictures...we had set up a time with a photographer through the littlest hero's project, to come take the pictures. she never showed. i was so disappointed, but Aunt Goo to the rescue, like usual, and they turned out great.

after making it through 2 bouts of pnuemonia in december, we were pleasantly surprised that the holidays went off without a hitch. i will be posting more pictures soon. but i wanted to get these up before i lost my train of thought!