Whew

We are so glad it is Friday!  I really wish that the first day of school had fallen on a Wednesday, so we could ease into the crazy routine, but the powers that be decided we needed to jump in the deep end of the pool and go all 5 days on the first week.  Whew!

Jackson is back to dreading school, not a big surprise since he's been back for 2 1/2 weeks.  Though his teacher reports he is doing well, and every afternoon he has good things to say about school.  

Alyssa transitioned well to 1st grade.  She doesn't seem any worse for the wear at the end of the day, and definitely not as worn out as she was her first week of kindergarten.  

On the other hand, I am dragging.  Teaching 3 classes back to back and then running around to get the kids from their respective schools in the hundred degree heat (in addition to doctors appointments) has me falling into bed exhausted at the end of every day.  It is only the first week (I hope this will feel easier soon) and I'm already looking forward to next year when Alyssa and Jackson will be at the same school.  

To add to the craziness, Matthew has been Trouble, with a capital T.  He has taken to carrying around the step stool, so that he can access places previously out of his reach.  He has brought me a pair of scissors from the kitchen drawer, sucked on a tube of capsasin from the bathroom cabinet, locked and unlocked the front door, and thrown everything he can in the sink.  I'm not sure I can go any grayer from the stress of an even more adventurous Matthew.  So far, no injuries, but I fear we are one moment away from one.  (The capsasin adventure had me panicked, but he did fine after I washed him down with milk.)   He is definitely the most fearless and adventurous Hoy kid so far.  I had assumed we did all of our 'baby-proofing' with Alyssa, but Matthew has proven me wrong.  Time to go hide all of the sharp objects!

Exhibit A

Exhibit B (in lieu of the step stool, he'll use a chair)

 

Love the 1st Day

I love the first day of school.  New school supplies, special attire, and the anticipation of what is to come--I love it all!  Today was Alyssa's first day of 1st grade.  I was so excited to ride up to school with her today, like we did every day last year.  That 10-15 minutes is always a highlight of my day.  

In Alyssa fashion, she asked me to wait across the street instead of walking her to the door or bike racks.  So from across the street, I watched her cross, rack her bike, and walk in to school with a little friend who is in her class.  And just like last year, she never looked back.   

Now, I have a few minutes to catch my breath and get ready for my first day too.  Today is the start of the Fall semester at the college, and it is my first time teaching 3 classes back to back.  (The 3rd class did make, much to my surprise.)  I'm giddy to be going back to the classroom!

Happy first day of school! 

Alyssa's 1st day of 1st grade!

On and Off

Yesterday was a not-so-fun day.  

ON
First thing in the morning, we had to fight rush hour traffic to the medical center so we could pick up Matthew's compression stockings.  These stockings should help limit the foot swelling and improve the lymphedema.  First, putting compression stockings on Matthew makes brushing his teeth, getting him dressed, and changing his diaper look like a day at the park.  And he isn't a fan of any of those things.  To say he didn't like putting the stockings on that first time was a compete understatement. He was mad.  Second, pulling up a very tight pantyhose like garment on a 2 year old is a test of patience, even if he was completely still. But they finally went on, and though he seemed a little annoyed with them off and on through the day, the swelling did seem a bit lessened last night.  And this morning, Darren was able to get the stockings on him with a minimal amount of thrashing. The stockings are loud and pretty hideous, but at least people aren't wondering if he is wearing stockings, as they will know without a doubt.  Now they will only wonder why.

OFF
Last thing in the evening, I took Alyssa to the ER to have a metal ring (similar to a bolt) removed from her index finger. She had wedged it on her finger, couldn't get it off,and her finger swelled. After Darren worked on it with ice and oil, with Alyssa screaming so loudly I thought that the neighbors might call it in, we decided we needed a professional.  Unfortunately, the ring cutter in the ER didn't fit this ring.  First, the ER doc tried the same things we had tried at home, and I was getting more and more annoyed because 1) we had tried that and 2) it was making Alyssa nuts.  Finally he realized that (duh) it wasn't coming off, and went to his 2nd plan so we could avoid the 3rd and final option which was sending her to the OR to be put under anesthesia so they could saw it off.  Thankfully the 2nd plan, which was numbing her finger at the base so that we could pull without her resistance, worked!  We did need 2 big, burly guys to hold her down while the doctor gave her 4 shots in her finger but after that finger was numb, it only took about 3 minutes to twist it over her knuckle.  Her finger is still swollen, has some cuts, and she says it doesn't have the full sensation back, but hopefully it will be back to normal this evening and we will be left with a funny, but fairly expensive, Alyssa story. 

Suggestions?

Matthew doesn't speak, but that doesn't mean that he doesn't have anything to say! 

I went to a communications workshop this past Saturday, which introduced me to an alternative communication system for Matthew- communication boards.  Interestingly, this news article about iPad communication systems (really just a technology based communication board) posted on my Facebook wall that same day.  

The workshop gave me some information to chew on and made me even more anxious about Matthew's lack of verbal communication.  I took copious notes, and simultaneously prayed hard that we won't actually need this information, that Matthew will talk! 

Matthew is a very social kid, and I just have to believe that he will talk.  I jokingly say that I'm a step away from seeing a witch doctor about some snake oil if it might help Matthew to talk, but it isn't that much of a joke.  I will do anything and go anywhere, to help him communicate.  Sing to him, sign with him, use communication boards, talk to him, label everything, give him fish oil, see specialists, go to therapies, really whatever it takes!  If you know of something that might help that I haven't mentioned, please send me an email or post in the comments.  Any and all suggestions are much appreciated!

Big Smiles

A few of the moments that are making me smile these days:

-Watching the kids dance to the Phineas and Ferb theme song.  
-Reading "Goodnight Moon" to Matthew.
-Seeing Jackson in his school uniform.
-Hearing Alyssa have a tea party with her stuffed animals.
-Seeing Matthew dressed up in my triathlon gear.
-Watching Alyssa make faces for the iTouch camera.
-Seeing Jackson happily play with his Legos.
-Reading Skippy Jonjones books with Alyssa and Jackson.
-Seeing Matthew sign 'baby'.
-Listening to Jackson describe his day at school.
-Figuring out that Matthew was signing 'cow' to tell me that there was a cow on top of the dairy case at the grocery store.

Matthew reading 'Goodnight Moon'

Jackson playing with his Legos.

Alyssa hamming it up for the camera.

Matthew raided my triathlon bag.

Never Imagined

Our 20 year class reunion was this past weekend.  We didn't go.  I half jokingly say that I found everything I never could have even dreamed of at our 10 year reunion.  That reunion was the one where I caught up with Darren, and began this most amazing journey of sharing our lives. 

Although we went to high school together, had common friends, and attended the same college, it took getting to know one another as adults that led to friendship and love.  I still can't believe my luck!  My 17 year old self would have never imagined that my perfect partner was right there all along. 

Yesterday

All is well!  

Jackson had a good first day of school.  He came home excited that he didn't get on red and got to keep his privileges.  Probing further, he was on green all day but one of his new friends (whose name he doesn't remember) was on yellow.  Through the bits and pieces he revealed through the evening, it sounds like yesterday was all about defining the rules.  The turtle rule= no running.  The bear rule= hands and feet to yourself.  The rabbit rule= raise your hand when you want to talk.  So far, so good.  Only 9.5 more months of school to go. 

Matthew is back to his usual self as well.  Monday was rough.  Tuesday was better, though he fought a little stridor throughout the day.  Yesterday he was 100%.  Yippee!  

Yesterday, we went to see a special education advocate, who gave us some ideas and the correct verbiage for Matthew's upcoming transition meetings.  Very worthwhile.

Alyssa has another week and a half before she goes back to school and she was pretty excited that Jackson was going back first.  They have had a lot of togetherness this summer and the separation is a good thing-- for them and us! 

Jackson's First Day

Today is the first day of school for Jackson.  He was pretty tentative at the meet the teacher yesterday, but he still seemed excited to start school this morning. I hope his first day of his first kindergarten goes well! 

Jackson's first day of kindergarten (part 1).

Venogram

Just as we have so many other times, this morning, Matthew and I journeyed down to Texas Children's before the sun came up.  This time it was for his venogram.  It has been 14 months since he visited the OR last.  I had forgotten the pit in the bottom of my stomach that I get when he waves goodbye (and blows me a kiss- a new thing) as they are taking him to the OR that doesn't go away until I hold him again.

Thankfully, all went well.  Matthew's veins have actually improved since they were last 'seen' during his heart catheterization in October 2010.  Almost 2 years ago, he had 2 inferior vena cavas (takes blood from lower extremities to the heart).  Now he just has 1, which is more typical and efficient. 

Ruling out blood flow as a potential reason for Matthew's feet edema (swelling) has led the doctors to believe that the cause is the lymphatic system.  The best treatment for lymphedema is compression stockings, which we have ordered and are ready to be picked up.  Hopefully they will help, and all we need to do is keep an eye out to make sure the swelling doesn't worsen and the skin stays healthy.  We are really hoping that the lymphedema is something caused by his hypotonia, and something that he will outgrow. 

Matthew woke from the anesthesia just as I was allowed back to recovery.  He was unbelievably groggy, but ready to have the pulse oxometer, iv and blood pressure cuff off.  He wasn't mad, just annoyed.  Once we got those moved from his sight, he drank 5 boxes of apple juice and promptly laid his head on my shoulder and went to sleep.  He had a bit of stridor, but I asked them to hold off on the vapo breathing treatment, as we learned last year that those meds can cause cascading interventions.  Thankfully, he started to sound better by the time we headed home.

After leaving the recovery room, Matthew had a bit of a rough time.  He is pretty swollen from the IV fluids (almost 3.5 pounds heavier this evening than this morning), he had spiked a fever for a little while, and was really groggy.  After some Tylenol and a 2 hour nap in my arms, he rallied for dinner and then conked out for the night.  Hopefully he will be his usual self in the morning.

Alyssa was a great help today, getting everything I needed while I held Matthew.  When she looked at him today, she had the same look on her face that she had the first day he was born.  I love how much she loves him.  And Jackson told me today that he and Alyssa would take care of Matthew.  Too sweet. 

I'm so thankful that all is well!  Thank you for the well wishes and prayers!!

Mattie was flushed with fever.

The Tylenol kicked in and he was able to sleep...hard.

TriGirl

It wasn't pretty, but I accomplished what I set out to do this morning at the triathlon-- I didn't drown and I finished!  300 yards swim, 11 miles bike, and 3 miles run.  The swim was much less intimidating in person than I imagined it to be in my head.  And the (just over) hour and 45 minutes passed much quicker than I expected, especially since I ran into a friend and spent the last leg catching up with her.  Overall, it was a great morning. 

A few random thoughts about the triathlon-
1.  My beloved was unbelievably supportive.  He racked my bike on the car (a few times), woke up early, and cheered me at the start, the transition, and the end.  Seeing him there waiting for me gave me a warm fuzzy.  I cannot thank him enough!
2.  I have no idea what the deal was with me and wild animals, but during a practice swim in Michgan, 2 muscrats crossed my path.  Then at home, during a training bike ride, a turkey vulture crossed my path.  And today, during the run, a raccoon crossed my path. I don't know if they were a good omen or not, but I've had my fill of wild animals for a while.
3.  I did this to push myself during the hot and steamy summer in Houston.  I am not a triathlete by any stretch of the imagination.  I doubt there is another triathlon in my future.  There were some hard core women at the event, I wasn't even close to being one of them, and never will be. I exercise in an attempt to stay healthy and set a good example for my kids. 
4.  With that in mind, though I was pretty proud with my finisher's medal on my neck, I was over the moon when Alyssa told me this evening that she was proud of me and she wanted to do a triathlon some day.  Now that made my day.

Slow and steady does not win the race,
but she gets a finisher's medal!

Ready for the swim.

On the bike.

Home stretch with my friend, Patricia.

Pinned to the back of my shirt.

Nervous Energy

I have a plethora of nervous energy right now.   

In about 36 hours (Sunday morning), I will be competing in my first (and likely last) sprint triathlon (300 yard swim, 11 mile bike, 3 mile run).  I use the word "compete" in the loosest of terms.  I have 2 goals-- (1) don't drown and (2) cross the finish line.  There is a good chance I will come in last, but I am okay with that. The whole purpose of signing up for this race was to keep me exercising during the summer, and it has done that.  So, this triathlon has already achieved its stated purpose, but I'm still planning on racing.  Otherwise it would be pretty anticlimactic after all of this training, and an unintended benefit, the triathlon is distracting me from the next event.

24 hours after the triathlon (Monday morning), Matthew will likely have his venogram.  This is an exploratory procedure to find out why his feet have been swelling.  The interventional radiologist and cardiologist suspect that it may be due to smaller than typical veins leading from his legs to his heart.  I don't know what I was envisioning when the doctor explained the procedure to me originally, but I'm finding out that this is definitely an invasive procedure. Although I have extreme anxiety about Matthew undergoing anesthesia yet again, I fear the thought of him having to have an extremity amputated down the road even more (which is a worst case scenario down the road if we don't figure this out).  We are praying that the procedure is picture perfect and the doctors are able to quickly identify and fix any issues. 

Down the Bunny Hole

My to-do list has always been a huge, hodge podge of things I HAVE to get done and things I'd like to get done.  I am a list person and it doesn't stress me out to have a lengthy list.  I am known to transfer tasks from page to page until they finally fall off.  (Speaking of- sorry to everyone who hasn't gotten a thank-you note for a wonderful gift or thoughtful gesture.  I did appreciate it but the thank you note writing was likely on my to-do list until it wasn't socially appropriate to send one anymore!)

As of late, I have fallen down the bunny hole.  There are way too many things on my (primarily Matthew) to-do list, with far too few hours in the day and with me lacking the energy to do them all. 

For Matthew--> Read the IDEA (Individuals with Disabilities Education Act) manual.  Make appointment with a special education advocate to prepare for our upcoming transition meeting from ECI to the school district.  Print out the Texas Essential Knowledge and Skills Curriculum for pre-kindergarten.  Call for appointment with developmental pediatrician. Update the printed list of Matthew's ailments, hospitalizations, uniquenesses, and doctors for his upcoming appointments.  Call the vascular malformation clinic to find out the details of Matthew's scheduled venogram dye study, currently scheduled for next Monday (but may be postponed because of his current croup causing virus).  Research dyes to be avoided since dyes can be difficult on the kidneys and Matthew only has one.  Call to schedule appointment for delivery of Matthew's compression stockings, around the dye study appointment.  Watch an ASL fingerspelling video and practice ASL homework to prepare for tonight's ASL lesson.  Practice early language activities with Matthew.

I feel like the list of to-dos for Matthew never gets shorter.  Reading the IDEA manual is one task that will inevitably lead to more new tasks (like printing the TEKS curriculum, creating a Matthew portfolio, etc).  The list is growing exponentially.

And this "Matthew to-do" list is in addition to actually caring for Matthew, and Alyssa and Jackson, and preparing for my classes this upcoming semester, and training for my upcoming triathlon, and the typical household tasks.  I have fallen down the bunny hole. 

No More Croup

The steroid shot must have done the trick, as Matthew's stridor went away.  Saturday night he still woke up a few times, but last night he slept through the night.  He still has a runny nose, but it isn't slowing him down.

I had assumed that the viruses that caused croup were similar to the viruses that cause colds--that once you get them you have immunity to that particular bug.  The doctor told me on Saturday that these viruses don't work that way.  You can get them over and over again, no immunity.  Not good news for Matthew, or for us for that matter.

See, Matthew is a loving kid, who loves to dole out his big, slobbery, open mouth kisses.  He hasn't quite figured out yet that we press our lips together when we give kisses.  I love his sweet kisses, but I'm pretty sure that is how he passed his virus on to me.  And likely Alyssa and Jackson too. 

Hopefully this will pass soon and health will be restored to the Hoy House.   

Stridor

We are woefully out of practice of getting up multiple times during the night, and for that I am grateful. To remind us of this, Thursday night into Friday morning, Matthew cried every hour, for about 10-15 minutes, starting at 11:30pm going until 7am.  Nothing really seemed wrong except for a runny nose.  Friday during the day, he rallied and was his usual self, albeit with a little runny nose. 

Then Friday night, 11:30pm, Matthew was crying the saddest, most unusual cry for him.  Going into his room, I could hear it-- stridor.  He sounded like he did the week he had croup (Spring 2011) and spent 5 nights at TCH.  We could hear every breath in, and every breath out.  After about an hour and Tylenol, he seemed to calm enough to go to sleep.  Then 4:30am, he sounded even worse and was laboring to breathe.  So, Matthew and I headed to the ER.  On the road, I was thinking how ironic it was that I just posted the Smart Patient post yesterday and now today I was heading to the hospital. 

About halfway to the ER, I couldn't hear Matthew's breath anymore.  He still sounded croupy when he coughed, but he no longer sounded like Darth Vader and he didn't appear to be struggling to breathe anymore.  So, I turned back home.  Thinking of the Smart Patient book, I figured there was no reason to risk hospital germs when we could wait a few hours to see the weekend pediatrician. 

Later in the morning, the weekend pediatrician looked him over and yep- Matthew has a virus that has caused croup.  Because of his throat anomalies, his episodes of croup/stridor are often more severe than typical.  To keep us out of the ER and the hospital, the doctor decided on treating it aggressively with a shot of steroids rather than the oral version we usually go home with.  The steroid should kick in about bedtime.  Matthew is his usual self today, but the real test will be tonight.  We are all praying for him to have a good night's sleep and that this steroid shot did the trick!

During the day on Friday, Matthew was as active as usual.

Smart Patient

A few weeks ago, I got a babysitter for the morning so that I could spend a few hours alone at my favorite used bookstore. It was well worth it.  I walked all the aisles, fondled a boatload of books, and picked up a boxful of books to add to our collection.

In that box was a book I wish I had known about 2.5 years ago-- You- The Smart Patient: An Insider's Handbook for Getting the Best Treatment by Micheal Roizen and Mehmet Oz.  Darren's comment when he saw me reading it was "Couldn't you write that book now?"  Yes, reading it now is a review of many of the lessons we had to learn the hard way but it was a good refresher.  

Though most of the information in the book would have come in handy as Matthew had 25 nights in the hospital, 2 trips to the emergency room, and 6 trips to the operating room, some of the information in the book would have given me even more anxiety.  "As many as 98,000 patients die every year from hospital errors.  Another 2 million hospital patients get infections. Your personal odds of having a significant unexpected complication (meaning one that could lay you up for weeks, leave you permanently disabled, or kill you) when you check into the hospital are 1 in 25."  With Matthew's multiple trips to the hospital, that risk is multiplied!    Ugh!  Doesn't make me want to rush out and schedule Matthew for another surgery!

Speaking of the next surgery, we are coming to the later part of the summer, and we have been thinking about Matthew's postponed hand surgery.  After I was spooked, and especially after reading this book, I need to do more research about hand surgeons and hospitals before we make a decision.  We need a hand surgeon who has done this surgery a great number of times (which we had at the Scottish Rite Hospital) AND a hospital that can handle any emergency (which the Scottish Rite is not set up to do, as they are an orthopedic hospital) AND a hospital that has serious infection prevention measures in place (which I'm sure the Scottish Rite has but was not our experience when they put Matthew in the same inpatient room as a little boy fighting a staph infection).  So, more research before we reach a decision one way or another. 

Blue Funk Lifted

On Saturday, I went to lunch with a mom who has a unique son as well.  He has a different diagnosis than Matthew, and different manifestations of his chromosomal abnormalities, but it was nice to commiserate and share experiences with someone who has a little boy walking a very unique journey.  Having lunch with her reminded me (1) how very far Matthew has come and (2) how very lucky we are to be where we are.  It snapped me out of my obsession with what will happen in Matthew's future, and that is exactly what I needed to get me out of my blue funk.  It is like a haze has lifted and I feel like myself again. 

So-- now to share a few of the things that are making me smile:

-Alyssa came home from day camp on Monday and told me "I met a boy today and he said he wants to marry me but actually I'm not so sure."  That night she wrote her name and phone number on a piece of paper to give it to him the next day and she brought home his name and number too. I guess we'll have to set up a play date.
-There must be something about day camp because the last time Jackson went, he just had to take 2 water guns on water play day, one to share with a girl in his camp. When I asked her name, he said "I don't remember, (big pause) but she is beautiful."  It wasn't 'Find a Mate' camp, it was just the school district's day camp!
-Last week, I took Matthew to a story time (in sign language) held at the college and on our way he ran to keep up with his shadow.