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!