Thursday, July 29, 2010

Post Surgery Update

Here we are yesterday at 4:30am on our way to the surgery center. I just HAD to go to the photobooth it felt WRONG not to. I bought him a t-shirt with the superman logo for his surgery outfit.

My friend Valerie and my parents all were there with us during the surgery. It was a surreal morning. We were asked to give him a tincture of tylenol liquid mixed with Verced which is a type of medication similar to valium. It was strange to have Jerry hold him and while I fed him this liquid. It made me nervous. He got drowzy immediately. Very slow moving, very sleepy, very drugged out. This is what he looked like right after I gave it to him:

The anesthesiologist was wonderful. He was a warm fresh bright being. You know that feeling immediately when you meet someone - he had that something. Made me feel ok handing him over once we walked down the hallway towards the surgery room. Dr. Wright and his assistant were both there and I felt confidence in all of them. It was hard to watch him being held by other people we just met walking away from us. We held hands back to the lobby. My tummy was sick inside and I felt like there were earthquakes going on as the floor seemed to bend and shake every so often, but I was told it was just me.
My friend Valerie was the entertainment - and let me tell you - I was laughing so hard with her stories that my stomach hurt. So that, in between feeling that sick feeling about my son being "under" and "worked on" was a total trip - like a roller coaster ride in a dream where you know everyone but it's unfamiliar but familiar. I know that doesn't make sense but it was dream like.

here's valerie entertaining:

here are my parents - being entertained:

here we are trying to allow ourselves the gift of being entertained!

The surgery took an hour and when they called out our names we jumped and our hearts dropped. We were taken to the recovery room and waited there for what seemed like an eternity. I could hear him crying on the way over to us...the anesthesiologist carried him in to me as I sat in a deep upholstered rocking chair covered in a white sheet. Max had tubes connected to him and a bag of fluid the Dr. was holding on to. He handed Max to me and it was hard to see. He was crying and his tears were blood. I was dabbing the corners of his shut eyes with a little swab of cloth they gave to me. It was hard to hear him cry like that and to see that blood even though they warned me it was going to be like that.

Here is the photo jerry took right after Max was put in my arms:

I was so happy he was alive. Seriously - that was the big fear of ours that he wouldn't make it through the surgery. So that smile on my face - even though I do look a tad haggard (!!) - is just expressing my relief that he made it through.

The harder part for me was when the nurse took out the IV in his foot and took it out in such a way that it spurted blood all over Jerry's pants and on the rocking chair and Max howled in pain from that more than the eye surgery. I felt faint. I got quiet. I wanted her to fix that ASAP. She did but I had already gone into that mode of no return of wanting my baby taken care of and you better get out of the way lady!

We walked out in to the lobby and Valerie and my parents came over to see Max and give hugs. Max was crying and I was uncomfortable and we all headed out to the car so we could get this superman home.

Max calmed soon after we got to the car and slept the way home. Slept most of the day away. Never needed any pain medication. Only woke up to eat and then would go back to sleep. My parents - who were prepared to stay as long as needed - left around 3:30 because Max showed no signs that he needed anything!

here is a photo of his eyes after we took him home:

Here is the photo I took right after my parents left:

he slept through the night and today has been more of the same - content - no signs of pain - and totally ok. His eyes are red and bloody where the whites would be - but only on the inside part near his nose - not the part on the outside. I've been watching his eyes and they seem to not be crossing although the dark blood makes it hard to tell - especially because it makes me feel faint to look at that part for too long.

here is a photo of his eyes that I took today:

they don't bother him a bit - he isn't trying to rub them or touch them at all. Still no need for tylenol at all which has been surprising. We heard all sorts of stories about it being a very hard time after the surgery for many reasons - but so far
( knock on wood ) he is doing great. His parents are just suffering from a little cabin fever.

We have to keep him out of the bright light of the sun which is hard on days like today which are perfect summer days - and we snuck out at 6:30pm tonight to go to - guess where????
the photobooth!

Here is the photobooth photos from this evening:

Tomorrow we go for a re-check at 7am and have all sorts of questions mainly about when he can get outside and run around at the park and when can he socialize again with his pals, can he attend his friend Bella's birthday party on Saturday and of course the most important question of whether or not the eyes are straight....I believe the answer to that last one can only be told over time as he needs to get used to his eyes being like this now - and the blood needs to clear up. I'm just glad we are on THIS side of surgery instead of THAT side. I don't like that side much. It's powerless like I have never felt before. I still feel overwhelmed with emotion when I have a moment to think about all that Max has gone through the last few days. Luckily I don't have many of those moments as we are trying to entertain him and pass these hours by until we are allowed out!

much love to all of you who lit candles, said prayers, sent well wishes and support. I love you all and Max sends you a kiss as he looks at you with both eyes at the same time!

Tuesday, July 27, 2010

photobooth project and upcoming surgery

So - Max is having surgery on his eyes tomorrow to re-align them so that they are straight and no longer cross. He has Strabismus and alternating esotropia which in a nut shell just means that he either has one eye crossing or the other. The surgery is important early so that he doesn't get to familiar with his eyes being this way - and by the age of 2 is when you get binocular vision - it sorts of locks in so we want to give him a chance at that so if he wants to play soccer or drive he will have more opportunities to do so. Or whatever else he might be into.

Making this decision for surgery wasn't easy. It means they cut the muscles of the eyes and re-align them. yuck. ouch. no thank you. We met with a vision therapist who is against surgery but when we asked him what the success rate was with his type of therapy he said 50%.
We met with 3 different surgeons who all say the success rate is 80-90%. hmmmmm.
(It took three surgeons because we wanted to pick someone we felt the best connection with.)

Now, I'm all for doing LESS HARM - so I had to really think about what was less harmful...
Not doing surgery and hoping it works - or being more aggresive with our solution and being in a higher bracket for success. I want Max to have all the opportunites to live his best life ever so even though surgery makes me really really really uncomfortable - I am willing to go this route for the potential gains it will provide my son. Writing this makes me a little teary. I am just a tad over the moon for this little fella so the thought of putting him "under" for the surgery is scary no matter what the surgery is for.

So many of my friends who have children with Down syndrome had to go through their children having heart surgery the first days right after birth, and one of my friends son's has had 13 surgeries on different things including the one Max is getting tomorrow. I mean - I realize that it's not the same as heart surgery - but it's still intense to have to hand over your son to the doctor and the anesthesiologist - which of course brings me back to my spiritual practice even more - I mean - nothing is more powerless than this.

Thank God for all my friends in various types of spiritual practice and artists communities who have been there to send us love and support. I must say that facebook has been an amazing place this week for me to connect. I'm blown away by all the love from people who took Kelly Rae Roberts flying lessons class - and all of my friends in my 365 unravelling flickr group, and my dear friends from Minneapolis, Portland, the UK, Texas, etc etc etc....all day today I have been feeling so much gratitude for all of you. Thank you! I do feel you holding us!

My friend Clair suggested I do something as a ritual for the 9 days leading up to Max's eye surgery which is tomorrow. So I decided to take him to the photobooth every day. I LOVE this ritual and plan on going even after the surgery. Click on the photobooth photos above to see them larger. And YES I plan to take him to the photobooth the morning of the surgery! We have to be there at 6am so we need to leave at 5am. First stop - PHOTOBOOTH!

p.s. if you look closely you will see the day he got his haircut. SO SUPER CUTE!

There have been some wonderful events that past few weeks so here are a few to catch you up...

Max napping on papa!

Jerry's mom Marty came to town for a visit and we all went to the most amazing drum circle for kids that we have ever seen. over 150 people, lots of fun and we plan to go back regularly because....

clearly Max hated it!

That evening there was a concert at Huntington Gardens after they closed for members and guess what? We bought our membership in Max's birthday so here we are - Max again...clearly hates music!

Max started Water therapy once a week with his PT ( physical therapist ) Joe. And again - he clearly hated it. He was all smiles and squeals - he LOVES the water and he LOVES Joe so it's a great combo.

Today I bought Max a t-shirt with the Superman logo on it for his surgery day outfit. I think it's fitting. He is an amazing human. I am in awe of him. I love watching him become more and more of who he is. And I look forward to coming back here to tomorrow to share the success of his surgery with you all......

if you are up for it - light a candle at 7am pacific time - that's when Max's surgery is scheduled.


Friday, July 9, 2010

Video of Max walking...!

Max 17 months - catching him walking! from Catherine Just on Vimeo.

He has been walking for a while now - but is really getting the hang of it. Going about 6-9 steps or walking from the couch to the green chairs. It's amazing. But every time I try to videotape him. I get nothing. Somehow the universe aligned for me to get a little bit of what he does all day long...I thought the cracker would do the trick - but apparently a pool noodle was all he needed ( thanks Michelle! )

In other less exciting news than my son starting to WALK!!!!!!!
I only was able to post 3 journals onto Etsy today. Etsy is being a little fussy and isn't working so I'm going to try again over the weekend.

Here is a peek at the three I posted

Bird with Chairs.

Queen Bee.


You can find out more on the Etsy site. And soon - there will be MORE!

Starting a new business or changing it around feels just a tad like learning to walk. I take a few steps and then I fall down and get back up and take a few more and fall down. One thing I love about watching Max learn new things is that he never takes it personally. It shows me that I have much to learn from this young one. He is wise beyond his years.

Thursday, July 8, 2010

new journals!

I'm in the middle of prepping the photos of my newest journals and I thought if I posted one here and told you about them - it would help me get the project completed!

I have 6 right now that will be posted on my Etsy site by tomorrow afternoon.

That's the goal....and now you've heard it here!

They are moleskin blank journals with 3 different silkscreened images to choose from.

I can't WAIT to show them to you!

This one has a chocolate brown image on it. Love the rich color. I use these journals all the time now for lists, journal entries, photo ideas, drawing, business planning, etc etc etc...

....ok I need to get these photos cropped, listed and posted - here we go!