Wednesday, November 27, 2013

Thanksgiving Feast Warm Fuzzy

I mentioned in another post that Jackson had told me earlier this year that he'd rather I not come to lunch with him at school.  I even tried to bribe him with a special lunch, but he was undeterred.  His answer was still "no, thanks".  I try to spin this to a positive in my mind-- it is not that he doesn't want to spend time with me, it is that he is so engaged in school and with his friends that he doesn't want anything to take away from that time.  That's the rationale I'm going with, and it makes me happy.

So, earlier this month, Jackson and Alyssa's school hosted a Thanksgiving feast.  When I asked the kids if they'd like me to attend, as many parents do, Alyssa's answer was a resounding 'yes!'.  Jackson's was initially 'no, thanks'.  I chuckled.  Surprisingly though, Jackson changed his mind that morning when I asked one last time. 

Jackson made my day when he ran up and hugged me first thing. I was pretty giddy when he said he'd like me to walk him back to class afterwards.  Then, my heart soared when he held my hand as we walked the hallway.  I loved it!

He's become such a big kid, one that enjoys school and loves spending time with his friends. So independent now!  I love that, but I'm glad I still get to spend time with the little boy once in a while. 

Saturday, November 23, 2013


Lately I've been reminded a bit more than usual that Matthew's not a typical kid.  Yes, it could be the blue funk I mentioned earlier this week.

Going to Texas Children's like we did on Thursday always takes me back.  Yanking Matthew from his slumber in the dark hours of the morning so we can get to the hospital. Thankfully this time, only for an appointment and not surgery!  Seeing the all-too-familiar white trash cans. Why do I only see those particular trash cans there?  The smell of the soap. It is so very distinctive. Seeing Mattie on the same ultrasound table as he was on when he was so bad off this Spring.  Amazing the difference!

Though, the reminders are beyond that TCH visit.  I'm reminded every day when I drop him off at school (the preschool program for kids with disabilities) and for the twice a week therapy appointments too. 

As well, it is random moments.  I had a moment as the big kids attended a birthday party at a ceramics place.  All the cute hand prints on plates was a reminder of the moment we found out that he didn't have thumbs.  It also reminded me of the desire I had to get a hand print from Matthew before his skull surgery, as I feared I'd never see those sweet 4 fingered hands again.  So, so thankful I've gotten to watch those sweet hands grow and do amazing things! 

I had another moment when I saw someone post the ABC Family 25 days of Christmas television line up.  I vividly remember being in the hospital room with Matthew days after skull surgery (with his 102 stitches across his head) watching one of the ABC Family Christmas movies.  So, so thankful that you would never know what Mattie has endured, save the scar you can see when he gets his hair cut!

I have more moments as I watch him run--at school, in the driveway, in a store.  He runs all the time. This was the little boy I was afraid would never walk, that walked with a walker, and didn't stand on his own until he took his first step.  We saw every interim step and spent countless hours in therapy for this.  So, so thankful that he can walk and run!

I have other moments as I watch him ride his tricycle with his little friend.  Just 7 months ago, this little boy went from being very bad off in the hospital bed from his bowel obstruction and emergency surgery to learning to ride his tricycle around the 14th floor of the hospital in just a few days.  And he learned it without having to spend hours upon hours in therapy.  So, so thankful that he recovered so well and so quickly and also that not everything is a challenge for him!

These reminders bring a bit of sadness along with a bunch of thankfulness.  A heaping bunch of thankfulness!

Thursday, November 21, 2013

Urology Update

Matthew and I took another very quick round trip to Houston today.  This time for Urology-- a renal ultrasound and follow up appointment at Texas Children's. 

The good news is that the ultrasound showed that Matthew's horseshoe kidney is growing and functioning as it should.  Yippee!

The mostly good news is that Matthew's bladder was empty during the ultrasound, so the doctor doesn't believe we need to clear out the scar tissue in his urethra that was caused by the failed Foley catheter insertion during his first surgery.  He believes Mattie just needs to learn to relax a bit more to empty his bladder, and he's likely not doing that while on the potty-- right now.  He expects it will come with time. Alrighty. Anybody have any suggestions for teaching a 3 year old how to 'relax'?

The not so good news is that the doctor is recommending surgery to remove Matthew's urachal cyst. It isn't urgent, but something he'd like us to consider, given that a high proportion of this type of cyst become cancerous over time.  Though we knew it was there and that this might be a possibility one day, up until now, we were hoping the cyst would go away.  Today's ultrasound showed that it hasn't.  The good news is that it doesn't appear that it has grown or changed, but it is still rather large and somewhat concerning to the doctor. Hmmmm.

This surgery decision reminds me of Angelina Jolie's preventative double mastectomy after she found out she was a carrier of the BRCA1 gene.  You can read her op ed about it from the NY Times here.  At the time, I was awed with her decision, only imagining how hard of a decision it must have been.  Now we have a similar decision to make for Matthew.  If we remove the cyst, Matthew's chances of cancer are greatly lessened, but his rocky history with anesthesia and surgery make this a harder decision than we'd like. Please pray that our decision, whatever it may be, is the one that leads to the very best outcome.

Matthew enjoyed the sensory tubes in the ultrasound room.
It was a much different experience today than when we were in the same room this Spring, diagnosing the bowel obstruction.

Tuesday, November 19, 2013

Blue Funk

I've been a bit quiet on the blog as of late probably because I'm in a blue funk.  I am not exactly sure the cause, but figure it is a myriad of things. 

First, I recently went through the interview process for a teaching gig.  I felt a jolt of excitement about the prospect of being in the classroom again.  Unfortunately, on my first evening of training, the step before getting a class, I was told that the college is no longer offering the class I was pegged for, meaning, I still have no job.  I am not ready to teach full time, at least until Matthew is in school full time, and part time teaching jobs in Austin are a bit hard to come by.  I keep telling myself it will happen when it happens, but I do miss teaching. 

Next, I'm frustrated because Alyssa is experiencing some minor issues at school.  Alyssa has been a near perfect student up to this point, so this has come as a troubling surprise.  We are working on a plan to remedy the situation, but it has been another pea under my mattress.

Finally, I'm sure it is my blue funk already, but I've been a bit dejected over Matthew's verbal abilities.  With his other developmental leaps, he seemed to thrive once the switch got flipped.  He went from crawling to walking and then walking to running in a few months and riding a scooter a few months afterwards!  That does not seem to be the path in regards to language.  I still love the words he has, like mama!  But I miss the words he used to have but has since lost, like daddy.  I wish he had dozens more.  I wish he could talk.  The other morning, I had him picking out colors from a pile of colored animals.  He knew a lot more than I realized, likely because he doesn't say the words.  I fear that will be an experience he has quite often-- that the knowledge is there, but it is locked in his head until we figure a way to get it out, without the words. This makes me sad for us and for him. 

I'm hoping to shake this blue funk soon.  Hopefully the upcoming Thanksgiving holiday will help.  It is one of my favorite days of the year!

The animals at the bottom were the colors Matthew was able to correctly pull out of the pile.

Sunday, November 17, 2013

Jumping the Gun

So, what do you do when it is 88 degrees in mid-November?  You put up your Christmas tree, of course! 

Mattie helping Darren put the tree together.
Alyssa and Jackson decorating the tree.
As has been tradition the last few years, we put up our Christmas tree mid-November.  I know, there are those that think we are jumping the gun, but we found it helps us to enjoy the holiday season a bit more by spreading out the crazy a little.  And every little bit helps! Merry Harvest/ Thanksgiving/ Christmas!

Tuesday, November 12, 2013

Overcoming Adversity

This afternoon, I heard plastic cups moving around, but it took me a little while to realize that they shouldn't be.  This is what I found when I turned the corner into the kitchen: 

I sent the picture to Darren, who shared it with a good friend.  The friend's brilliant (and oh-so-true) reply:  "The problem with overcoming a lot of adversity is that he knows how to overcome adversity." Stinker!

Sunday, November 10, 2013

Keeping Up with the Jones

Keeping up with the Jones (Fig) - trying to match the lifestyle of one's neighbors.

This isn't something we really do, in the true sense of the idiom.  We sometimes march to a little different beat than many others.  It was much more noticeable when we lived near Houston.  Austin lives up to the slogan "Keep Austin Weird" and because of that, our differences aren't really that noticeable in comparison. 

Anyway, I thought about this the other day.  When Jackson was 3, I very vividly remember having a lengthy conversation with him in the middle of Target because he had told me that 'girls couldn't be awesome like boys', of which he learned from his little 3 year old pal, DJ.  When I think back to that conversation, I have to smile. 

But, I get a little sad too.  Matthew is now the same age as Jackson was when we had that conversation.  With Matthew, there are no lengthy conversations.  There are a dozen words and lots of sounds that we can't decipher.  I have no idea if Matthew doesn't think that girls can be awesome like boys, because, very simply, he can't tell me.  That makes my heart hurt.

When I think of Matthew and all that he has endured and accomplished, I am overjoyed. He has mastered eating with a spoon.  He rides a tricycle.  He says "mama".  He is amazing! But when I compare (or try to match the lifestyle of one's neighbors, or siblings as it were) I am beyond sad, acutely aware of how different and delayed he really is.

Matthew with Aunt Susie.

Friday, November 8, 2013

4 Years

I walked out to the car the other day and I was struck by utter sadness as I looked at the ovarian cancer awareness ribbon we've had displayed on our car.  How has it been on our car long enough that the magnet has faded and cracked?  How has Jenn been gone that long?  How has it been almost 4 Thanksgivings without her?  It doesn't seem possible. Part of me expects that we are just a car trip away from seeing her again, and I so wish that were true. 

We miss our cousin, our friend, Jenn today and every day.  We are thankful for the time we had with her and the connections she gave us that have brought joy and love to our life.  It is a testament to who she was--the planner, the connector, the warm soul with a friendly smile.  We miss her!

Jenn is in the teal to the right of Minnie. 
How can it have been that long ago?
Cancer sucks!  Please remember that ovarian cancer's symptoms are often subtle.  Most women with ovarian cancer ignore or rationalize away the symptoms-- bloating, pelvic and/or abdominal pain, difficulty eating or feel full too soon, either too frequent or too urgent urination, fatigue, indigestion, back pain, constipation and/or irregular periods.  If you or someone you know has a plurality of these symptoms for any length of time, please get checked!  There is no reliable, early detection test for ovarian cancer.  Survival rates are high when the cancer is found early, but because the symptoms are quiet and there isn't an early detection test, most cases of ovarian cancer are found at later stages when the survival outlook is not very positive. Be aware! The Ovarian Cancer National Alliance offers a free Symptom Diary App, which women can use to track symptoms and risk factors. Learn more and access the app at

Thursday, November 7, 2013

Cardiology Check

Yesterday, Matthew and I took a very quick round trip to Houston to visit with his cardiologist.  3 hours there, an hour at the doctor's, and 3 hours back-- all in time to meet the kids after school. 

I wasn't particularly concerned with this appointment as Matthew is freakishly active and healthy right now, but there is always a little bit of worry in the back of my mind when we see a specialist.  Will he knock the knees out from under us?  We had that happen so many times when Mattie was a baby.  He has been on a very long straight road of late.  Please don't be a curve in the journey.  At the appointment, Matthew had his echo cardiogram done first, then we waited for the doctor.  As we waited, I got more and more anxious.  Please be good news.

When the doctor opened the door, he had the biggest grin as he watched Matthew jumping off the step stool time and time again.  Seeing his smile be told of the news he had to share--Matthew's heart is doing well!  Mattie has some issues that we continue to monitor-- the bicuspid valve, the dilated aortic root, the small aortic arch, the PDA closure, and his low resting heart rate-- but everything is stable and performing as it should be.  Very good news! 
Matthew playing with a car while we wait.

Wednesday, November 6, 2013

So Lucky

We have been so lucky to have found the houses in which we have grown our family. 

We just lucked out with our house on Cypress.  We moved in when Alyssa was 9 months old, so we weren't all that cognisant about the school, the park, etc when we moved in.  We later realized what we had-- a short bike ride to school, within walking distance of a park, paths to run, a community pool to swim, as well as a house that fit us well.  We had great friends in the neighborhood, although none actually on our street. What luck!

Then we moved to Austin, and we have lucked out here as well.  Because of the ammenities we had previously, there was a big list of 'must-haves' when we moved.  Top on my list was that we needed to be within biking distance to school. Luckily, we found that in a house that fits us well, is walking distance to the park, has paths to run and hike, and a community pool to swim.  This time, we really lucked out with some great neighbors within line of sight with great kids-- lots of kids-- for our kids to play with.  We spend a great deal of time outside these days.  The kids have tons of playmates they love to spend time with and we have adults we enjoy conversing with whilest the kids get their crazies out. 

Our little subdivision of our neighborhood reminds me of my neighborhood growing up--kids outside playing, riding bikes, and sometimes being a bit reckless.  I am so happy that our kids have the opportunity for that experience.  I am so thankful!

A sampling of the kids!

Tuesday, November 5, 2013

Confusing Strangers

When I was staffed in Brazil in 2002, I knew about 5 words in Portuguese.  This would often confuse taxi drivers, as I would say "Good morning" and "Thank you".  They would proceed to speak to me in their native language and then I would look like the confused foreigner. 

This was Matthew on Halloween.  He couldn't manage saying "trick or treat" or any semblance of it.  I considered printing him out some cards I had seen on a special needs website, that convey the message that he can't say "trick or treat" but would like to say it if he could.  Instead, I assumed he'd be young enough to get away with not saying it this year.  He would walk up to the door, say something totally unintelligible, hold out his bag, and very clearly say "thank you".  I think one person was a little confused as to why he wouldn't (she likely didn't realize he couldn't) say 'trick or treat'.  He has just enough language to confuse strangers. I remember that feeling all too well. 

I really hope that next year I don't need to print out the cards! 

Monday, November 4, 2013

Time Change

I have such mixed emotions about the time change.  Fall back is supposed to mean that we get an extra hour of sleep for one night. 

Hah! Not at our house, where our kids' internal clocks are so powerful, they will keep waking at the same time, even though they were put to bed an hour later and the clock says an hour earlier! 

I was bemoaning this last night, and then this morning, I woke up at the normal time, even though my clock said it was an hour too soon.  Guess I can't fault the kids when I do it too!

The good about the time change:
+We now bike to school in the light! It was way too dark last week when we biked to school.  I feel much safer in the light!
+Monday morning was pretty smooth, probably because we didn't have to drag the kids out of bed.

The bad about the time change:
-When Matthew's body said it was time to nap, it was still school time. When we got home from school, he was overtired and didn't want to nap. 
-Every day we are working on a hour sleep deficit from the nighttime.  That is bound to catch up to us!