Monday, March 31, 2014


Lately, I've been plagued by guilt. 

Am I doing enough for Matthew?  Should we put him in more therapy?  What about the speech focused school?  How in the world am I thinking of going to work full time?  How can I give everything to the kids and still be me?  Is there any new research on speech delay?  Should I be more structured in my play with Matthew?  Am I devoting too much time to Matthew in lieu of Jackson and Alyssa?  What if we devoted all of our resources to getting Matthew to speak and he still doesn't?  Will I always wonder 'what if' if we don't?

I wish I knew the answers to these questions and more.  I wish I could be confident that the decisions we are making now would net the best results, but I guess that is a wish of every parent.  I saw this posted on Facebook and thought it summed up some of my angst.  I guess I'm not the only one.

Not that I feel 'judged', but always happy to get a simple smile!

Saturday, March 29, 2014

Thank you!

When people talk about luck, Darren and I usually slip each other a secret look.  We feel like we know a bit about luck and amazing odds-- we have the 1 in 7 billion kid.  His chromosome duplication is de novo, meaning that it didn't come from Darren or me, and that if he had been conceived moments earlier or moments later, he might not have his duplication.  Luck and amazing odds.

We also feel like we know a lot about luck because we have been so very lucky as we've navigated Matthew's journey. If we hadn't lived in Houston when he was born, we might not have received such a quick diagnosis or been tied in with such an amazing support team of doctors, nurses, and therapists for the past 4 years. If his GI hadn't by chance noticed his big heart in an xray of his intestines, Matthew would have likely succumed to heart failure.  If his craniofacial surgeon and team in the OR weren't unbelievably quick and amazing, he likely would have bled out during surgery.  We have been so lucky.

We know we are so very lucky to have the family and friends that we have, all of whom have been unbelievably supportive and caring during the past 4 plus years.  We can't even imagine what this journey would be like without each and every one.  Thank you!

Friday, March 28, 2014

Wedding Crasher

We found Matthew's nirvana-- a place where he can run, dance, and be loud and joyous-- a wedding reception.  I can't remember a time when Matthew was as happy as he was this past weekend at Uncle Will and Aunt Tiffany's wedding reception.  Pure happiness!  He needs to find some wedding receptions to crash! 

Thursday, March 27, 2014

Messy and Incremental

At lunch the other day, one of our friends remarked that 'progress on the ground is messy and incremental'.  I nodded my head in agreement because that sums up our experience with Matthew so very well.  He has worked so hard for those 'little' moments.  I reveled in the progress the other day as I watched him eat a bowl of cereal, with milk, on his own.  That progress was messy and incremental, but look!

And I thought about it a little later as he climbed on the swing and wanted to be pushed as we waited for Jackson to get out of school.  This is the kid that struggled to sit on his own, that struggled to stand, and that struggled to walk.  The progress was messy and incremental, but look!

To the outsider, these images may look like just another moment in any other day.  For us, as we saw and experienced the messy, incremental progress day after day, moment after moment, these are amazing moments, the culmination of so much time and effort.  Happy day!

Wednesday, March 26, 2014

Big Green - Week 2

Remarkably, Jackson is still handling big green amazingly well!  I think I've had more woe-is-me moments than Jackson has had!

We traveled about 20 hours round trip to Mississippi last weekend and we pushed it a little too hard getting back (not stopping as often as we should have) but Jackson weathered it well overall. And it was totally worth it, as we had a fantastic time seeing family and adding Aunt Tiffany to our family!  (Congratulations to Uncle Will and Aunt Tiffany!)  The wedding was beautiful and the reception was tons of fun.  We are pretty sure Jackson was out on the dance floor more with the cast than he would have been without it. 

2 (plus) weeks down, 4 more to go!

Broke down and got a handicapped tag for Jackson,
not really because the distance,
but more for the extra space to get him and the wheelchair in and out.
I know it is justified, but still feels weird to use it.

Tuesday, March 18, 2014

Big Green- Week 1

So far, I've been amazed at how well Jackson has handled his monstrous cast.  For a kid that I used to call Eeyore (because of his not-so-sunny disposition), it is nothing short of phenomenal. I think he's handling it better than I would.  And for the rest of us, it is an inconvenience, but (1) we've endured much more and (2) when we have to pick him up, 95% of the time he hugs us and tells us he loves us.  Pretty great.

Anyway, today was our first follow up doctor's visit.  So far, so good.  The x-rays showed that the break is still in the right spot and just waiting for the healing!  Surgeon said it would be another 5 weeks in the cast, and then at least a walker for a few weeks, if not a brace too.  We'll know more at that next appointment in 5 weeks.

Yesterday, Jackson went to school just like always, save we now drive him and walk him into school. I chuckled this morning, telling Darren "nothing like an injured birdy to bring out the mothering instincts in the little girls".  Jackson was surrounded by classmates willing to help him this morning. It was so sweet.  As well, the art teacher offered to let Jackson be her helper when it is his PE day.  Also, very sweet. 

1 week (plus) down, 5 more to go.  I hope the next 5 go as smoothly!

Monday, March 17, 2014

Spring Break Moments

-Jackson went to Lego camp for Spring Break, with big green!  And after he spent 7 hours there each day, what did he do when he got home? He built with Legos.

-Matthew has been singing in the car to "What Does the Fox Say".  He has a few favorite songs that he approximates and I love each and every one...even "What Does the Fox Say".

-Alyssa wanted to go early to tutoring over Spring Break, so she could get more work done.  This is the academic girl I'm used to seeing.  She's been a little MIA this school year, but I'm glad to know that deep down, she's still in there!

-Matthew was completely put out there wasn't school during spring break.  He would frequently say "Iwannago" and sign "school".  When I told him there was no school this week, he would get pretty mad. 

-For the last several months, Matthew has been writing primarily with his right hand.  Spring Break, he decided to mix it up and start writing with his left.

-Alyssa, Matthew and I went to Cypress to visit friends at the end of Spring Break.  It was bitter sweet-- great to see good friends (and old teachers!) and catch up, but sad too in that we don't get to see them more often.  I kept reminding her (and me) how lucky we are that we have love in both places!

Tuesday, March 11, 2014

Happy 40!

Happy 40th birthday to my beloved!  I cannot imagine a more perfect match to which to live this crazy life! 

Darren- thanks for doing the recon on 40 for me! I'll meet you there in about 6 months! XOXO

Sunday, March 9, 2014

Random Thoughts Re: Friday

A few random thoughts about Friday:

1.  How lucky is it that Netflix just added the Star Wars: Clone Wars series on Friday? Jackson loves that show and he's only seen the first season.  Now, he can catch up on seasons 2 through 6 on the couch!

2.  The doctor considered having us stay overnight at the hospital on Friday until we could get a wheelchair on Saturday.  Ironically, I had a wheelchair in the trunk of my car.  It was my grandmother's, and I intended to donate it to the Ronald McDonald House but I just hadn't done so yet.  So, now we'll use it before donating it.  My procrastination paid off in that we got to sleep in our own beds Friday night!

3.  It was such a different experience caring for Jackson in the hospital than caring for Matthew in the hospital.  Jackson was so much easier!  We typically don't watch a lot of tv in our house, so Jackson was totally enthralled by the Disney Channel and Nickelodeon. 

4.  One of the post-op nurses told me it was okay to cry before he woke up. I must have looked at her like she grew another head.  I think she understood the look after I explained that a cast (even this monsterous one) is nothing compared to heart surgery or 102 stitches across a 9 month old's head.  I would have been scared and nervous Friday if it had been our first time in an ER or OR waiting room, but unfortunately we are seasoned veterans in those rooms. 

5.  As a seasoned veteran, I feel like I'm a decent judge of doctors now.  I really, really liked our orthopedic surgeon.  She was thorough in her explanation, never talking down to me.  And she even sang "Everything is Awesome" for Jackson and talked Legos.  Big fan! 

Saturday, March 8, 2014

Big Green

Some days just don't go as you planned.  Friday was definitely one of those days.

On Thursday, Jackson came home from school walking slowly, saying he couldn't run on his left leg.  Thursday evening, he had tears from pain in his leg, but after some Advil, he seemed fine.  Then Friday morning, he didn't want to put any pressure on it.  We figured it was a pulled muscle, but wanted him seen by the pediatrician, just in case.  He told the doctor that someone tackled him at recess but I'm not sure the validity of that explanation.

We got in for a prompt appointment on Friday morning and after some prodding, our pediatrician referred us for a set of xrays.  Jackson was a total trooper and I promised him he could have whatever he wanted for lunch.  On our way from the xrays to McDonald's, the pediatrician called.  This not being our first rodeo, I knew it wasn't good when the pediatrician calls you 10 minutes after xrays.  They found a fracture on his femur in his hip socket, right near the growth plate.  Not good at all.

So, instead of McDonald's, we turned the car around and headed for Dell Children's Hospital, where Jackson hobbled around until the doctor said absolutely NO moving the leg.  We spent time in the waiting room, then the ER, then a CT scan, then a pre-op room, and then we met the orthopedic surgeon.  There are 2 methods of treating this type of injury-- cast around the waist and down the leg to immobilize it completely or a screw.  At first I was intrigued by the screw option, until she detailed out the possible issues going forward.  The screw could harm his growth plate and that leg would be shorter than the other with all the issues associated with that OR the growth plate would be okay and he would likely need another surgery in time to get a bigger screw.  Neither of those options seemed good, so he got the around the waist/down the leg cast.  Short term pain for long term gain.  Well, at least we hope.  If in a few weeks, the scans indicate the bone has moved or isn't healing, he may still have to have the screw.  

So, Jackson went under anesthesia for about an hour and woke up with his humongous cast.  We are just now starting to think through the implications and ramifications of this cast.  He can't walk, so will be mainly wheelchair bound for the next 6 weeks. He needs help with all transitions- in and out of the car, bathroom, bed, couch, etc. 

We did hit McDonalds on the way home, which he proceeded to throw up all over our bed.  It was pretty funny as all he had to say about it was 'ooo, that's gross'.  He also worried where we'd sleep, but he was okay once we told him we'd change the sheets and sleep in our bed as usual (that this was not the first time for this!).  He seemed to sleep well and woke up as usual.  The entire day on Friday and so far today, Jackson has been amazing.  He hasn't complained and has been fine.  I'm thinking that his disposition will change as the newness wears off and the boredom sets in, but we'll deal with that if/as it comes. 

Tuesday, March 4, 2014