My Little Companion

For the last 9 months, I've spent most of every day with my sweet baby Matthew.  He's my perfect little companion--mostly happy, rarely upset, pretty easy to please, and often joyful (well, except at the eye doctor anyway).  He's just happy to be where I am and go wherever I go.  Anytime I'm without him, it just feels weird.  I love having my little man with me wherever I go. I feel lucky that I've had the opportunity to spend my days with Matthew. 

My little companion hanging with me at Target.
I love that smile--it makes my day!

Recovery Update

I'm surprised at how great I feel, having surgery a little over 36 hours ago.  I'm home, moving around, and pretty much pain free.  The only issue now is that for the next 2 weeks I can't lift anything heavier than 10 pounds, and Matthew weighs almost 20.  Should make for an interesting 2 weeks. 

Random thoughts about my surgery--
*I guess the Hoy House minimum number of surgeries this year had not been met, and since Matthew wasn't scheduled for any more, it was my turn.  Hopefully we are done for the year now!
*While the surgeon was digging in my belly, having to navigate around some fat, why couldn't he just take it out?  It would have helped him see better and it would have been a little bonus for me.
*I figure this was a weekend event.  Appendicitis on Friday, surgery Friday night, home on Saturday, feeling pretty great on Sunday!
*I'm very thankful for the good surgeon, the nice nursing staff, and the comfortable bed at our local hospital. 

Appendicitis

Earlier this week, my throat hurt.  So, Thursday I went to the Rediclinic.  No strep, just viral tonsillitis.  Thursday night, my throat hurt worse and I started getting abdominal cramps.  Friday morning I started running a fever.  Figuring it was really strep but got a false negative on the rapid strep test, I went to the HP health center.  I explained that I thought that I had strep, that my throat hurt, that I was running a fever and my abdomen was tender.  When the PA started poking around, I almost hit the ceiling when she poked just to the right of my belly button.  She voiced she thought it might be my appendix.  Oh, and no strep.  They did a blood draw and sent me over to the hospital for a CT. 

I picked up Darren so he could care for Matthew while I got the CT.  Little did I know the prep for the contrast CT would take an hour and a half.  So Darren headed home with Matthew while I got the CT.  The radiology tech of course couldn't comment, but he did say just to stay put, don't bother having Darren come get me just yet.  Call from the PA at the health center...yep, it was appendicitis and I needed to be admitted for surgery.  The pain worsened throughout the day.  5 hours after my health center appointment, I was admitted to the hospital and 8 hours after, I was in surgery.  I awoke to Darren and my folks, who let me know all went well and the doctor would have some pretty cool pictures to show me tomorrow (now today). 

It's been a surreal experience being on this end of the surgical process.  I'm used to being the worried parent, not the patient.  Gives me even greater respect for my sweet baby Matthew!

I feel like my sore throat was divine intervention. I would have let the abdominal pain go on for much longer (likely through the weekend, unless the appendix ruptured) but I was annoyed with the sore throat so I went to be seen.  Interestingly, the sore throat has improved through the day, that or the abdominal pain made it seem less so in comparison.  Either way, I'm thankful for that sore throat, it saved me from a ruptured appendix! 

Success

Yesterday's working session with Jackson, where we go over the letters of his name over and over again, was a success.  He spelled his name, identifying the letters and putting them in the correct order. Most exciting, then he was able to identify the letters as I pointed to them out of order.  First time he's been able to do that. Thank goodness!!  I'm hopeful that he'll be able to repeat that task!  It will make our working sessions much less frustrating.  It gives me hope that he'll know his letters and numbers by the time he heads to kindergarten.

And then this morning, Darren and I both found success on the scale.  We've been highly diligent about exercise and our diet the last few months and it is paying off.  I've been trying to lose the last few stubborn baby pounds, which I can now say, after almost 16 months, are gone!  I'm finally at my prebaby weight.  Yippee!  I periodically get frustrated that I have to be so very diligent with exercise and my diet to maintain my weight, but then I remember that pretty much nothing comes easily to Matthew and I stop my pity party.  If my only struggle is that I have to eat right and exercise, then I am one lucky woman!

All Over

Matthew is all over the place.  He pulls himself from room to room, getting into stuff, playing with toys on the floor, smiling at his people, rearranging the picture frames on the bottom bookshelf, and even getting so that he can better see the tv.  It's pretty awesome watching him do something so typical, yet so remarkable. 

Matthew rearranging the dog pictures on the bottom shelf.

Humble Pie

I've been feeling pretty competent in my role as a mother of 3.  The kids and I have been on our summer schedule for several weeks, and after the rough 1st day, it has been pretty smooth.  We go to the pool, go to the grocery store, work on school work together, play hard, ride bikes, and generally have pretty good days together. 

But yesterday was the kind of day that keeps me humble.  I took all 3 kids to Jackson's eye appointment and I'm not sure I've ever been that unprepared or ruffled.  I was too short with the kids even though Alyssa and Jackson did pretty well.  Matthew was fussy, not wanting to be held and making all of us and those around him miserable.  The appointment took a lot longer than I anticipated (over an hour and a half), and the carrot to control the older kids (ice cream) didn't seem very smart an hour away from dinner.  Well, it wasn't and unfortunately not only did I have to pay the price of peeling the kids off the ceiling before bed but Darren did too.  (Sorry darling!)

It was a good reminder that I always have room to grow.  Mistakes were made, but lessons have been learned and hopefully not repeated. 

Eye Dr Visit

We've been a little worried about Jackson lately.  A little over a month ago, we noticed that Jackson didn't recognize letters or numbers.  He's almost 4 and should be starting to get it by now.  Not sure how this escaped our notice, but he either faked it pretty well or we were just distracted.  Either way, as soon as we noticed, he was moved to a different teacher at preschool (who Alyssa had last year, and is great!) and we've been diligently working with him on his non-school days. 

After many frustrating sessions, where Jackson can say the letters, but just can't connect the sound with the visual, I've started to fear we might have a bigger problem than us having unrealistic expectations (given Alyssa's desire/ability to read) or him just not being exposed to letters and numbers.  After some research online and hearing some anecdotes that sometimes problems like this are actually eye sight issues, I made Jackson an eye appointment.  I was praying this was an eye sight issue.  It would be a physical reason for the issue, and something we could likely fix. 

Unfortunately, that is not the case.  Jackson's eye sight is good.  He's a little farsighted but that is typical at his age.  So, we'll continue the frustrating work with Jackson and work with our pediatrician and others to make sure that there isn't an underlying issue keeping Jackson from his greatest potential.  

Jackson at the eye doctor

Well Check

Matthew had his 15 month well baby check today (a few weeks late). He's finally in whole number percentiles-- 13th percentile height (same as at 1 yr), 1st percentile for weight (he was just a fraction at a year), and 2nd percentile for head (he was just a fraction at a year).  So even though he's still small, he's made up a little ground!   

The nurse has finally remembered Matthew and stopped asking us the age appropriate developmental questions (e.g. Does he say 3 words?).  Matthew is receiving services, monitored through ECI and will do what he can do.  Those questions don't offer anything for Matthew except a reminder that he's not typical, which we really don't need. 

Looking at Matthew as Matthew-- he's doing fantastic!  Dr. W was pretty excited to hear that we should be surgery free for the next year (until we address the thumbs next summer), so Matthew can concentrate on growing and developing instead of surviving and recovering.  Hopefully we'll continue to see Matthew's slow and steady progress!

Happy Father's Day

To all the great daddys, step-dads, Godfathers, granddads--
Happy Father's Day!!

I feel lucky everyday that I picked the right guy to be my kids' daddy and my partner in this amazing journey called parenthood.  Thank you, my love, for being a great daddy!

Give Blood

I used to donate blood every 8 weeks (when I wasn't pregnant or nursing).   I loved it--it was easy and afterwards I would get a cookie and go get a burrito at Freebirds (my favorite) which was right across the street from the blood bank.  It was a treat, but even though I stopped nursing Matthew at his first birthday, I've just been lax about getting back in the routine of donating blood. 

I know the importance of donating blood-- it saved Matthew's life.  Those rocky moments I alluded to when Matthew had skull surgery were moments that Matthew almost bled out.  From what I gathered from the anesthesiologist, an artery in Matthew's head got nicked, which is not uncommon and is why they ask that we have directed donations ready.  The doctors had a hard time getting Matthew to stop bleeding. They pumped a unit and a half of blood into Matthew's little body as fast as they could, which stabilized his blood pressure and stopped the bleeding. We will forever be thankful to my dad and our friend Peter for their directed blood donation that saved Matthew!

If we hadn't the directed donation (or if Matthew had needed more or if it had been an emergency surgery), we would have relied on the kindness of strangers for that life saving blood.  Thankfully there are strangers who donate too.    

I know I need to be one of those people. I have good veins, I have the universal donation blood type (O-), and I can donate. There are kids having surgery, people who have been in accidents, boys/girls/men/women fighting cancer, and countless others who need that blood to live!  Right now, there is an 18 year old boy from our neighborhood with an artificial heart.  Jordan is awaiting a heart transplant at Texas Children's.  Through his fight, he's needed blood products.  And he's just one of thousands in the medical center today who may need blood so they can continue their fight. 

Today, there is a blood drive just a few blocks away, in Jordan's honor.  I'll be there with my pint... for Matthew, for Jordan, and for whomever might need it! 

Life w/3 Small Kids

Crazy,

messy,

delightful,

loud,

funny,

frustrating,

mirthful,

busy,

joyful,

exhausting,

exuberant...

life with 3 small kids. 

Perfectly Unique

Yesterday, for the first time in Matthew's 15+ months, a stranger noticed and commented on Matthew's missing thumbs.  Mattie and I were at an electronics store where the really nice manager (at least I hope he was the manager, he was very 'managerial' & personable) was being very sweet to Matthew, smiling and waving to him.  As Matthew waved back, the manager looked hard at Matthew and then at me, saying "his hands".  I smiled "yes, he doesn't have thumbs."  And the manager had the most wonderful response-- "he's perfectly unique."  Perfect words that totally fit our sweet baby Matthew.  Just the way God made him.
 

Museum Experience

We took the kids to the Houston Natural Science Museum yesterday.  We originally went because there was a Texas exhibit we wanted to see.  Taking the kids to the Texas exhibit was not a smart move.  The 5, 3 and 1 year olds don't really understand the deep history and cool artifacts from our state's birth.  Besides Jackson seemingly having ants in his pants, Matthew decided that he'd practice his a-sounds as loud as possible while we were trying to quickly get through the exhibit. I'm sure the other patrons were thrilled.  Finally, I called it a loss and took Jackson and Matthew out.  Darren finished his quick tour with Alyssa in tow.

Jackson was much more enamored with the Africa animal exhibit they had just outside of the Texas exhibit. 

Jackson was very interested in
the partially 'eaten' zebra leg

The Africa animal exhibit, the 3 dinosaur skeletons on display, and the hands on chemistry area saved the museum experience for the kids.  So, even though different than we expected, it was a good day.  I hope my folks get a chance to visit the Texas exhibit...what we saw of it was neat!

Matthew had no idea what any of it was,
but he loved it all!

Right Motivation

The beautiful brilliance of the right motivation--

Matthew's a huge fan of the computer,
especially Facebook.

He needed help up, but once standing,
he stood on his own for a bit.

Great Day

Today was a great day.  I'm so very thankful for the great days!

After a rough start, we made it to the pool, where we ran into some friends.  Alyssa and Jackson had a great time in the water while Matthew and I hung out poolside, since he still can't go into the pool post-surgery.  It was a fun time and this sufficiently wore out the kiddos, making quiet time very quiet.

Then, Matthew's language therapy appointment was amazing today.  He's made a huge jump in his development just in the past few weeks and his therapist was thrilled with his progress.  He's been waving "hi" consistently and seems to even be trying to verbalize it too.  He's been initiating games, like peek-a-boo.  He's eating 'puffs', grabbing them with his modified pincher grasp and putting them in his mouth.  It's just so encouraging! 

At today's therapy appointment, Mathew added a few new tricks.  He played a simple game of putting a ball in and taking it out of a dish.  When we said "in", he put the ball in the dish.  When we said "out", he took the ball out.  I commented at the beginning of the in/out game that I thought he'd need 2 hands to get the ball out, but the next moment, he proved me wrong by palming the little ball with his beautiful 4 fingered hand.  I should never underestimate our sweet baby Matthew.  Also today, after being shown how to do it once, he began giving 'high 5s' (or 4s in his case).  And the cherry on the sundae, Matthew gave me a wide open mouth kiss on my cheek.  It was just the greatest!

Later, Matthew had his Urology post-op appointment where they removed his stitches.  At the beginning of the appointment, the staff confirms what medicines he is on.  I'm always so excited to say "none" and was even more excited when the nurse said "Wow, really?  No meds for the congenital heart baby?  That is amazing!"  It is amazing-- how very far he's come.  He continues to amaze!  And I'm so very thankful!

Hoy kids at the pool

So Small

There was a really nice woman in line behind me at Wal-Mart today.  She was talking with Matthew, complementing his big blue eyes and long eye lashes, and waving to him.  I always wonder if people notice that Matthew isn't typical and my guess is she had no idea.  She was making small talk and she started to guess Matthew's age.

Her: "Is he 7 months?"
Me: "He's one" (I figured I'd just round down.)
Her:  "Why goodness, he's so small!"
Me:  uncomfortable silence with slight grin.

I know she didn't mean anything by it and was just trying to be nice and make small talk, but it felt pretty awful.  We know that Matthew is small. He struggled the first 7 months of his life to just survive with his heart that was working way too hard. That alone would make him smaller than the typical kid. Adding into the mix (1) his short mother, (2) his rare chromosome duplication which is known to cause growth retardation and (3) the fact that he's had a surgery every other month for the last 10 months, it isn't surprising he's not anywhere near the typical growth curve.  We are just thankful that he's here with us, no matter his size.  These are things that strangers don't know and don't appreciate when they see our sweet baby Matthew.  Next time I think I'll just say "Yep, it's the way God made him." 

2nd Day Summer Schedule

The silver lining about having such a rough start to our summer schedule is there was a lot of room for improvement. Today no one was in pain and no one was throwing up...immediately making the 2nd day of our summer schedule better than our 1st.  What a difference a few days makes. 

Really, we had a good day-- a play date at the park, Matthew's physical therapy, naps during quiet time, and a trip to the grocery store. I remember when the thought of taking all 3 kids to the grocery store would have sent chills up my spine but now it seems like a good way to spend the afternoon.  What a difference a few months makes. 

Small Steps Forward

Matthew has really worked to move-- first he was barrel rolling to where he wanted to go, then he would Army crawl (pulling himself forward with his belly touching the ground), now he is up totally on hands and knees for long periods of time trying to figure out how to crawl by coordinating his legs with his arms.  My heart hurts to watch him, as I can see how hard he's working and yet he hasn't quite figured it out.  But I'm also encouraged that every few weeks he's making small steps forward.  Slow and steady forward progress is a good thing!

Matthew trying hard to crawl

Matthew's Recovery

Matthew seems almost fully recovered.  This morning, he was rolling around on the ground, up on his hands and knees rocking back and forth, and pulling himself around the living room.  He is acting like his old self, with no meds.  Opening Matthew's diaper is still a little scary (and makes Darren turn a little green), but other than that, you wouldn't know Matthew had surgery 4 days ago.  We are so very thankful!  The gift of another day is a beautiful thing! 

1st Day Summer Schedule

Yesterday was the first day of our summer schedule, with all 3 kids at home on Tuesday/Thursdays.  My plan for the days with all 3 is to go to the pool in the morning to wear them out for quiet time and maybe the library or park in the afternoons. 

Yesterday, with Matthew not even being 24 hours into his recovery, my plans were shot.  Matthew can't be submerged in water for another week, so no pool.  And most importantly yesterday, he was in considerable pain.  He could barely take a breath without moaning/whining...and that was with Tylenol.  Midday I went to fill his baby vicodine. After one dose, he was MUCH better.  He didn't need pain meds for 16 hours after that one dose.   Additionally, after the throat scope, his throat was irritated and his breathing was a bit wheezy yesterday, but thankfully is quiet today. 

To add to the craziness yesterday, Alyssa woke up with a fever and began throwing up.  So, with Matthew recovering and Alyssa sick, we stayed home and had a movie day.  Thankfully by about 4pm, Alyssa fully recovered and Matthew was showing signs of being his old self.  Though it was a rough start to our summer schedule, it was fantastic to be at home to deal with it all, instead of the hospital! 

The kids were all well enough to play together in
the late afternoon. They worked together to help
Matthew get the coins in the pig. Very sweet!

Frightening 5 Minutes

Matthew's surgery was supposed to last 2 hours, and at the 2 hour 10 minute mark I began to get anxious.  At that time, I see a family called into a consultation room.  That's a little uncommon in this particular surgical waiting room, as surgeons are known to come out and talk to the parents openly in the waiting room.  That's what the ENT did after she scoped Matthew's throat.  I have always feared being called into the consultation room.  Good news is typically not delivered in the consult room.

Moments after the family was called in, there was wailing and screaming.  Everyone in the waiting room looked to those closed doors and bowed their heads.  We all knew what that meant.  Our hearts hurt for this family who lost their little one, and the fear in our hearts grew a little more.  It could happen to any of us.

Ten minutes later, I got a call from the front desk...go to consult room C.  My heart hit the floor.  No, no, no, no, no.  Please let my sweet baby Matthew be okay.  I sat in the consult room for what felt like way too long, but was probably 5 minutes.  I stared at the door.  I prayed.  I tried to distract myself.  I stared at the door. I knew that when Dr. G walked in, I would know.  And when the door finally opened, I knew in that moment that Matthew was okay.  Thank God!

Dr. G listed out what they did, and he did have a few concerns...the blood flow on the right side of Matthew's body doesn't seem as rich as the left and the damaged urethra.  I think he might have thought I was being flip about his concerns, but really, I was just relieved Matthew was okay.  I was going to hold my Matthew and take him home!  That was all I could think about.  We could deal with any concerns.  Today was not Matthew's day.  Matthew was okay!  Thank you, God, for the gift of another day!

Surgeons Report

The ENT went 1st.  Matthew does have some uniquenesses in his airway.

1- Matthew has laryngomalacia, which is where the soft cartilage of the voice box collapses in.  This is often seen in infants, but they usually outgrow it by 1 year.  Matthew likely continues to have it because of his low muscle tone.

2- Matthew also has tracheomalacia (mild), where the windpipe collapses a little, also likely because of his low tone.

3- Matthew also has subglottic stenosis (mild). His throat narrows right below his vocal cords, which is likely causing the issues  with intubation and will make him more prone to croup and strider. The throat tube size for his age is 4.0, and his size is actually a 3.5, so they have been intubating him with tubes too big.  We'll work with the ENT to monitor this over time. It sounds like issue 1 and 2 aren't as big of concerns as this issue. 

Then went Urology.

Dr. G brought Matthew's testes down and closed up the hernia on both sides.  He scoped the urethra that did have damage from the foley catheter incident at Matthew's first surgery and he checked the bladder where he didn't find any evidence of the urachus.  We'll just have to keep an eye out for any issues with the urethra, which may or may not develop with time. 

After surgery, Matthew was taken to recovery and when I was called back, he was awake and sucking down as much Pedialyte as they would give him.  After waiting to ensure all was well, and consulting with anesthesiology to ensure that Matthew's airways sounded clear (didn't want a repeat of last time), we came home.  After which, Matthew proceeded to suck down a bottle of formula and fall fast asleep in his crib. 

Thanks be to God for protecting our sweet baby Matthew and thanks be to everyone who prayed and sent well wishes to our Mattie!  Thank you!

Urology Surgery

Matthew is back in the operating room right now.  Today has just been... unusual.  In the past, Matthew has been the first case of the day, but today the scheduled time for his operation was 10:45a.  So instead of journeying down to the medical center in the dark, it was light and the peak of rush hour (making it so we couldn't take the HOV lane into town).  We fought the traffic, but made it here about 20 minutes before our assigned 8:45a check in time.  After the usual routine of vitals, we were off to the holding area.  And we waited, and waited, and waited.

Matthew was hungry (last eaten at 7p last night) and tired (it being his usual naptime).  I'm so thankful for his sweet disposition.  We played peek-a-boo (a current favorite), knocked on the water bottle, sang songs, played with a ball, etc.  Finally, he was just done, so to distract him, I walked laps with him in the stroller around the holding area.  They finally gave up our holding room because we were never in it.  72 steps per lap and 15 laps every ten minutes for 3 hours.   He even snoozed for a moment or two.  Finally at 3 hours 15 minutes, Matthew was taken back to the operating room. 

And now we pray for a successful surgery and a quick recovery!