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.

xoxoxo
c

15 comments:

kelly@thebluemuse said...

I will light a candle, and think thoughts of love and hope and comfort, for both of you. What a wonderful little boy.

Jodie Bell said...

A Superman T-shirt is perfect Catherine! We are holding you all close xx

Kathryn Hansen said...

those pictures are priceless! Good luck! my prayers are with you!

Valerie Weller said...

Thank-you for posting this beautiful post Catherine. I can totally feel your "mamma protection" in every word. Please know that a candle is going to be be lit at 7am and my "mamma thoughts" and lots of prayers are with each of you! Looking forward to many more photobooth pix. He's a sweet, sweet boy!

Cole said...

Will be thinking of sweet Max and your family tomorrow and wishing for a swift recovery. The Quail went through abdominal surgery in May and as scary as it was- it gave us a new appreciation for her spirit and determination- I'm sure you'll find the same grace tomorrow- hugs!

Bronwyn Shields said...

Hang in there, it will be tough, but you are doing this for all of the right reasons. I'll be thinking of you guys in the morning and looking for an update.

I started Ryder at a music program called Music Rhapsody. Clearly, he hated it, much as Max hated the drum circle. What is it about music and our kiddos?

xo

Bronwyn

Curlie Girlie Art said...

oh Catherine, could not hold back the tears on that post. No matter what the surgery our mommy hearts are broken just a little knowing our babies our out of your hands for that moment in time. My thoughts and prayers will be with your family and your sweet little boy. Hugs and love sent your way!!!
PS - Love the photo idea - just beautiful :-)

cypress sun said...

hey amazing mama ~ may you feel the loving, supportive presence of everyone tomorrow, and the days that follow..

Team JHB said...

Loved your post, Catherine =) Our family will be praying for you and we will light a candle too! Can't wait to read your next post and hear that Super Max is doing well! Hope to see you soon. Hugs, Heather, Jeffrey and Benjamin

thicklygrownwithweeds said...

We'll be there tomorrow in Spirit and Light.
Looking forward to good news post-op.
And here's to fun sleepy photobooth shots in the morning.

Susannah Conway said...

I'll be thinking of you guys xoxoxo

Francesca said...

We'll be thinking of you, darling :-)

Wendy said...

Kisses and hugs to each of you. By now the surgery might be finished and I am sending up prayers and good thoughts for a steady and successful recovery for your little family (I'm sure all of you will need to recover from the ordeal!) XO, Wendy from 365

Angi B said...

Best of luck to Max and to you! I will be sending lots of well wishes and positive mommy thoughts his way and yours.

Ennealogic said...

Dear Catherine, I've never posted here before but am awed by the dedication you display by recording your experiences and trials and frights and joys with Max. You are truly an inspiration to many, I imagine, who have the extraordinary opportunity to care for a DS child.

Thank you for your reporting, and may you, your husband, and your precious child keep growing strong and well.