Wednesday, October 24, 2012

To cut or not to cut?

"When life gives you a hundred reasons to cry, show life that you have a thousand reasons to smile."

- Author Unknown

Emma lives this quote.  I have never met a child that is happier or who can find fun in the mundane more than Emma.  The other day we were at the store and I saw a shirt that says "Smiles all the Time" and so I had to buy it for Emma.  The child radiates sunshine.  There is an amazing glow that just radiates from her - it's something that most people notice and never forget about her.  Even if they have only met Emma once I'm often reminded by them that the thing the most remember and associate with Emma is her amazing smile and glow.

Yesterday we visited Emma's orthopedic surgeon for our 6 month visit.  We thought most of our follow-up visits with her various specialists are now more "routine" and that things with Emma were going in the right direction like I discussed on this post.  We were wrong.  The x-ray they took showed her right hip is 50% out of the socket, likely a result from her recent growth spurt.  They looked at her hight changes from the last 6 months and couldn't believe how much she has grown.  I can.  I move her around all day, every day and my girl is LONG and, thank goodness, lean.  Supermodel material for sure!  But I'm not about to let that industry get their hands on my little angel.

Anyway, I digress.  A long conversation about the x-ray results, Emma's range of motion, etc. followed.  Her doctor wants to do an adductor release (and hamstring release surgery as long as she's under) on her within the next 3 months.  Time is important here because if we don't get it in time then Emma will face a hard, painful surgery on her hips.  There is still a chance Emma would need the painful bone surgery even after having the adductor release surgery but it would buy us a lot of time.    The adductor release surgery is a more minor (not that anything is minor when talking about your child having surgery) procedure with a much shorter recovery and much less pain.  He said on a scale of 1-10 with 10 being the hardest surgery the bone surgery is about a 7-8 and the adductor release surgery is a 0.1.  I likened it to ear tube surgery vs. cochlear implant surgery and he thought that was a great analogy.

Emma's doctor is really good and patient.  He took the time to talk to me as long as I needed - which is probably why he often is running very behind in his appointments because he takes his time with patients and families.  I appreciate that quality in a doctor.  I asked so many questions because, of course, this was the one visit with the orthopedic surgeon Chris didn't attend.  You know....because they are routine at this point and we didn't expect it to be an interesting visit.  Her dr. is 100% sure this is the correct surgery for Emma.  I asked about a second opinion and he said all the dr's at that hospital would give the same opinion as him and that we should be careful who we consult with and make sure it is a dr. very familiar with children with spastic quad CP.  Our hospital, DuPont Children's Hospital, has the largest practice for children with spastic quad CP in the country and so they have a large base of experience to draw from when making recommendations.  They do lots of research, they have leading doctors.  They are a top hospital and the quality of care Emma receives is amazing.  We really do love it there but whenever someone talks about putting my child under anesthesia and then cutting her muscles I think it is good to consider a second opinion.

When the doctor was drawing what he would do during the surgery Emma was very interested.  She thought it was all SOOOOOOO funny.  She couldn't stop laughing.  There isn't much that gets my girl sad besides bedtime and getting left behind when someone walks outside.

I took all the information from the doctor and shared it with Chris.  I also sent emails to some friends with children older than Emma to get their opinion on the surgery.  This is a very common surgery for children with CP so it's highly likely everyone we know with CP that is older than Emma either had the surgery or considered it at some point in time.  I also posted this to our CPMoms yahoo group for input.  And I came up with another question for the dr., emailed it to him and had a response from him in my mailbox this morning.  We're not sure what we'll decide, but it's likely we'll pursue the surgery because we sure would like to avoid the major surgery if we can.

Last night I took a long, hot shower.  There is just something about water cascading over my head that instantly relaxes me and that is exactly what I needed.

It's been a long week!  Last week at a "routine" eye exam the dr. told me that Emma has cortical vision impairment.  She is highly functioning with it but might need some accommodations on print size as she progresses in school and help with spacial perception as she continues to work on her power chair.  We'll deal with this as necessary just like we do everything else.

And Emma will be our guide to helping us remember - lest we forget - that we have a thousand reasons to smile.

3 Comments from readers:

Anonymous said...

Hi. I have followed your blog for awhile but have never commented...I'm more of a lurker. Your daughter is adorable (actually both of them are adorable.) Anyway I also have a daughter like Emma and we also live in Pa and go to Dupont. My daughter just had the bone surgery this summer and the "lesser" lengthening surgery two years ago. Feel free to email me at candedarpino@verizon.net if you would like to discuss in more detail. Also, If I remember correctly, you had moved to Pa awhile back but I'm not sure if you have a modified home...there may be an already fully accessible home going up for sale in our development...just an FYI.

Laura said...

So sorry your having to make these decisions for Emma. Cody is also having hip trouble. He was scanned for the first time in April and both sides are on there way out. They recommended the bone surgery for this fall (too far past the muscle release) We just had a followup and they haven't changed much so we are hoping to wait another year. Is Emma in pain at all? Our therapist who is from Columbia and has some different views on things is telling us not to do it cause he will never move the same....UGGH so hard to know what the right decision is!

Anonymous said...

Wow, after reading that first comment, I just have to say how I love the internet. Amazing.

I'm so sorry to see you (and Emma) getting these curve balls thrown your way, but you're so wise to follow her precious little lead and remember all the reasons there are to smile. Easier said than done, but your strength and positive attitude always shine through in your posts, just as Emma's joy and spirit shine on everyone who meets her. Sending you guys our love.