"Lost My Job"

Jackson came home from preschool on Wednesday and said "I lost my job today".  After some questioning, I came to the bottom of the story.  Jackson was 'classroom helper' and was acting up while standing in line, so he was no longer classroom helper.  We had a discussion about the consequences of not following directions, but I had to bite my lip so as not to laugh.  His little 4 year old "I lost my job today" was just too much.  

I've been worried about Jackson for the last 6 months.  He seems to still be struggling with using a pencil, learning his letters, staying focused, and keeping his emotions in check.  We took him to get an evaluation for attention issues--and the diagnostician didn't think he had attention issues at this time.  She thought he might have some low level anxiety (not a huge surprise given his favorite Star Wars line is "I have a bad feeling about this"), and also may need an evaluation for speech and OT.  I'm curious as to what those evaluations will net.  Some days I believe that Jackson is a typical 4 year old and others I feel like he's falling behind.  It will be nice to have the professionals' opinions, and it will be good to address any issues if there are truly issues that need to be addressed.  

Today is Jackson's last day at his current preschool.  I'm a bit sad, as I will miss the relationships we have forged there, but Jackson and I are both excited about him starting his new school on Monday.  I hope that the increased structure and the change will be a good thing for Jackson.
 

Either way, I feel as though I need to do a better job of balancing the need to set Jackson up for success and just accepting Jackson for the kid he is.  It is a tough balance but I need to do a better job of just enjoying his wicked sense of humor and his loving spirit.

Scratching My Head

There are three things going on with Matthew that are making me scratch my head.

1.  In the last few days, you can hear Matthew's stomach slosh around.  I would expect this if he had just consumed a lot of liquids and I was swinging him around, but this is hours after he's eaten and you can hear it slosh just when you pick him up.  Weird.

2.  Also in the last few days, he's gone from eating an amazing amount of baby food in one sitting to absolutely hating even being put in his chair to eat.  Doesn't matter if we are giving him baby food or table food, he just doesn't want to eat right now.  Not fun.

3.  Since he got his teeth, Matthew has been grinding them on a periodic basis.  Now he does it constantly.  I've been trying to find a oral-maxillofacial specialist (wondering if Matthew's jaw/mouth are a little unusual), but I'm having trouble finding one that deals in pediatrics.  Besides a potential physiological reason, I'm not sure why else he may be grinding his teeth.

I debated whether to the call the pediatrician about these oddities, and finally decided that I might as well on the off chance these are all related.   Earliest we could get in is tomorrow morning.  I can't imagine what he'll be able to say or do, but doing nothing doesn't seem to be improving our situation.

Family Resemblance

I think everyone who knows me well knows I was adopted when I was an infant. Growing up, I was always proud of being adopted, I had fantastic parents & being adopted made me a little unique. The only regret I ever had about being adopted is that I have never sat across from someone who looked like me. I could never say "I have her eyes or his nose or her hair."  

When I was pregnant with Alyssa, I would imagine how amazing it would be to see someone who has similar DNA as I do...for the first time ever!  And wouldn't you know it, Alyssa came out looking exactly like Darren!  There wasn't a bit of me in that baby.  She may have 1/2 of my DNA, but you couldn't tell it!  I didn't know then how strong the genes in Darren's family were, but since Alyssa, I'm now well aware.  We were even reminded recently, as Facebook has a feature that auto-tags pictures based on facial recognition.  Alyssa has been tagged as her Aunt Rachel and Darren's Grandfather was tagged as Darren.  Those are some strong genes! 

I had forgotten about my wish to see at least one of my features looking back at me until Jackson was born.  He was born with 1 dimple and a divot in his chin...both of which he got from me. I cried when I realized that he got those from me. For the first time ever, I saw it!

And then there was Matthew. I was a little sad when I read the 4Q article that said that kids with the 4Q chromosome duplication often look more similar to other kids with 4Q duplications than their own siblings.  But I'm finding that those Hoy/Stach/Richied genes are pretty powerful, even in my sweet baby Matthew with the extra 4Q chromosome.  I don't often notice the resemblance, but several medical professionals of late have commented on how Jackson, Matthew and Alyssa's features are similar.  That makes me happy!  

Lately, getting the 3 kids to look at the camera at the same time
is like putting cats in a bag!

Sleep Study

Well over a month ago, we began to notice that Matthew sleeps a LOT and sweats a LOT.  My mommy alarm isn't clanging loudly, but we thought it would be prudent to check it out to see if something is amiss or if this is just typical for Matthew.  

First we saw the cardiologist-- thankfully Matthew's heart is healthy and well!  Next we saw our nephrologist-- seems that Matthew's lone kidney is doing its job.  Mattie's C02 levels are a bit elevated, but we are just keeping an eye on it.  Finally we saw our neurologist.  He sent Matthew for blood work, and all the endocrine tests came back okay, except Mattie is a little deficient in vitamin D.  He also sent Matthew for an EEG, which Matthew screamed for an hour during. Hopefully they were able to get enough from the test. And he sent Matthew for an overnight sleep study, which Darren and Matthew went to last night.  There wasn't near as much 'sleep' as either Darren or Matthew are used to, but thankfully it is done, and we will get the results in 2 weeks.  

If the EEG and sleep study come back 'normal', then we are going to chalk up the excessive sleeping and sweating to just Matthew being Matthew.  I hope that is all that it is!

Wires everywhere! Hooked up to almost every other inch of Matthew!

I don't know how Matthew slept with all the wires, but thankfully he did!

A Year Ago

This past week, I've been struck with powerful emotions remembering back to last year. A year ago, Matthew was in heart failure.  He was screaming the entire time he would take a bottle.  He was becoming more lethargic and gray. His heart was pumping 4x more blood to his lungs than through the rest of his body. His lungs were filling with fluid. He was breathing heavy. 

Today, Matthew's heart is healed.  He is active, and pink.  His lungs are clear and his heart is normal sized.  He takes a bottle and eats baby food without issue.  What a difference a year makes!!   

I get frustrated from time to time that Matthew still has a long way to go....like someday I'd like for him to transition fully to table food-- so tired of jar foods!...but looking back, I am awed at how far he (and we) has come!  

I will forever be thankful for the medical care Matthew has received and the loving care and support our family has received through this amazing journey with our sweet baby Matthew.  Thank you!

My Favorite Images

These are some of my favorite images from the last few weeks--

I've been able to outsource some of the Matthew care to Alyssa.
She loves to feed him.



More outsourcing.  Alyssa is reading the boys the bedtime story.

Darren loves popcorn,
but the kids loved the airpopper popping it even more!



Matthew has taken to tucking his hand over the crib bumper while he sleeps. Sometimes he seems so big, and others he is still my sweet baby Matthew.

Insomnia

I don't know exactly why, but lately I've been struggling with a severe case of insomnia.  I am up for hours that I would typically be sleeping.  Irony is that the kids have been sleeping so soundly through the night and now I can't!  

I suspect the cause may be the result of being a bit overscheduled, a little stressed out, and a tad concerned.  I know logically that we are lucky, that whatever is going on now is absolutely nothing compared to life a year ago, but I continue to worry about my sweet baby Matthew.  Now I am worried less about his health and more about his care.  I keep hoping and praying I find the perfect person to watch him while I'm away at school, someone who will care for him and love him like I do.  

I also think I might have been a little crazy to take on 3 classes this semester. Though I'm only in class 9 hours a week, I grade and prepare at least twice that.  I am so thankful for the opportunity to teach, but I am mindful that I'm a part time teacher and mostly a full time mom.  If I'm given the opportunity to teach again next semester, I think my max will be 2 classes, at least until all 3 kids are in school (and we still have that luxury financially).  

Hopefully the insomnia is the result of the changes in childcare, and once those changes are complete and stable, I'll once again sleep through the night.  If it isn't that, but is school related, well, at least there are only 12 more weeks of the semester. 

Weekend Update

Just a little to report this weekend--

--I ran a 5k on Saturday and improved my time by 2 minutes.  Not my fastest but improved!
--Jackson had his 2nd t-ball game this weekend. It was again very cute, and thankfully a little less frustrating.  He seemed a bit more focused on the game and actually ran after the ball a few times (though he got frustrated that someone got to it first).
--Watched the Bears game with some friends that we don't see nearly enough.  Too bad the Bears lost.
--I spent a good portion of the weekend grading, preparing for class and creating the exams for this week.  Every time I think I hit a rhythm, I feel like I'm behind the very next day.  This week is 1/4 way through the semester...not that I'm counting!
--Matthew has been practicing pulling up on the furniture (or whatever else he can) and taking steps-- a lot this weekend. It made giving him a bath in the bathtub a bit more difficult this morning as all he wanted to do is stand and take steps.  
--This upcoming week is a big week. I'm giving my first exam in my classes and also interviewing a handful of people to watch Matthew during the day while I'm at school.  I say I know that no one will love and care for Mattie like I do, but I hope and pray I find someone who will!  And Matthew has PT on Tuesday, an EEG at the neurologists on Wednesday, and a sleep study on Saturday.  Add in dance on Monday for Alyssa and t-ball on Thursday and Saturday for Jackson and that equals another crazy week! 

Jackson's in the black shirt.

Inertia

Inertia is such a powerful force.  Even when I know that change will be the best thing for one of the kids or our family, it is so very difficult to initiate that change.  Thinking back, I don't think I've ever regretted a major change that we've initiated...from getting married, to having the kids, to moving back home to Houston, to changing daycares for Aly and Jax just days before Matthew's birth, etc. But I still struggle with purposeful change. 

Now we need to make another change-- by changing childcare for Matthew and Jackson.  Although we are so very thankful for the care we've received at our current daycare center, it is time for a change for a host of reasons.  We are looking to bring Matthew's care in house (have someone come to the house) and find a nicely structured preschool for Jackson.  I feel a little like I'm betraying the school that has done so much for us, but I know we have to do what is right for the boys. Our family and needs have changed and now it is time for their care to reflect that.  I'm anxious about the change, but I hope that it will all be for the best! 

My Happiness

The things that are making me happy...

-Matthew giving me big, wet open mouthed kisses on my cheek.
-Seeing Alyssa and her friend Jack come out of school with smiles on their faces.
-Not feeling as hurried, as we adjust to our new schedules.
-This conversation with Jackson-- J:  "I'll unbuckle my seat belt when I get to be a big boy." Me:  "You aren't a big boy now?" J:  "Yes, but not big enough to unbuckle my seat belt." Ah, 4 year old logic.
-Watching Matthew cruise on the couch.  He's making major progress toward walking!
-Alyssa being excited about checking out her first book from the school's library.  She picked out a Curious George book.
-Darren running 10 miles and it not seeming to impact him.  This makes me happy and a little jealous, as I run 3 miles and am wiped out!
-Jackson picking out 'The Hungry Caterpillar' for his nighttime book.  He gravitates to that book every so often and it always makes me smile.
-Watching Alyssa and Jackson so very excited about the air popper popping popcorn.
-Seeing Matthew get giddy about his nightly yogurt.  He does a happy dance when you pull the container from the fridge, even clicking his heels (braces) together.

Star Wars Exhibit

Yesterday we checked out the Star Wars exhibit at the Houston Health Museum.  Alyssa and Jackson were downright giddy when we went into the exhibit hall.  For the first 20 minutes, they walked from exhibit to exhibit, pointing out each item. "Look, it's a storm trooper.  Look, it's R2D2.  Oooo, look, it's a battle droid." (and so on)  

Jackson was pointing out the Princess Leia outfit to Alyssa.

We even got to sit in a mock up of the Millennium Falcon (which I'm not sure was worth the 30 minute wait), play with robots (that looked like R2D2) and make a land speeder out of legos and magnets (which hovered just like in the movie).

Jackson loves these destroyer battle droids.

It was really great to see the kids so excited.  But as Darren and I learned taking the kids to the Natural Science museum, they lose interest long before we do...even with it being Star Wars (their current favorite).

This was really neat. 
You moved the pieces around on table,
and you created Star Wars (this was Tatoonie) on the screen.

T-Ball

Jackson started t-ball and yesterday was his first game.  

Go Ironbirds!

So far, he's THAT kid...out picking daisies while (almost) everyone else plays ball. Well, he's not really picking daisies, but it is only because there aren't any growing on the field. Jackson really didn't stick out that badly, most of the kids were a little confused or distracted from time to time, but it was definitely little frustrating (and really cute) to watch.  His coaches were very nice and redirected him every time he seemed to forget why he was out there.  

According to Darren, compared to his 2 previous practices, this is the most focused Jackson has been.  I'm confused as to Jackson's lack of focus, because when you ask him, he says he's having a great time at tball.  Seems contradictory to me, but I guess as long as he's having fun (and especially if he improves his focus throughout the season), it will have been well worth it. 

Unique Beings

Last weekend, I felt like we were just managing the bad mood that was being passed from kid to kid.  This week has been much better.  I feel as though I've been able to appreciate the kids for the neat, unique beings they are.

Alyssa is studious and she's strong.  We took a family bike ride on Monday after a good day at school.  Alyssa took a turn too fast and slid off the sidewalk and into the drainage ditch.  I was watching and it scared me.  But she got up, cried for a minute, and then got on her bike to finish the ride.  So strong!

Jackson is energetic and funny (both intentional and unintentional).  Coming out of a friend's house on Thursday, he jumped out from behind the bushes to scare me.  He loves to surprise people. And some of the things he says are just too funny, though he doesn't intend for them to be.  If we ask him to do something he doesn't want to do, he'll slump his shoulders and mumble "you've got to be kidding me".  It is hard not to laugh out loud at it.

Matthew is sweet and easy going.  Matthew got his 2 shots at his 18 month appointment on Thursday. He cried for two seconds and was perfectly fine when I picked him up. He's just my sweet baby Matthew.

It has been nice to enjoy the kids this week.  Hopefully it will continue over the weekend, which seems to be when the bad mood comes out to rear its ugly head.  Hoping it stays away this weekend!

A little blurry, but couldn't catch all 3 kids still today!

Neuro & 18 Month Check

We are still adjusting to the craziness of the new schedule.  Fitting in doctors appointments used to feel nutso, and now it feels doubly so.  

Yesterday, after my morning class, Matthew visited the neurologist for the first time.  A new specialist!  We made the appointment because of Matthew's increased sleeping/decreased liquids but as our pediatrician recommended, it would be good to have a neurology evaluation anyway.  The doctor was really sweet, and Matthew took to him immediately.  He told us some things we already knew--yes, there is a neurological component to Matthew's duplication (developmental delays, hypotonia) and he confirmed that yes, Matthew will walk (we knew this from Mattie's actions of late, but it is always nice to hear a professional say it). The doctor also recommended blood work for Matthew, a sleep study and an EEG--all scheduled in the next couple of weeks.  It will either shed light on what is going on with Matthew, or give us peace of mind that whatever is going on now shouldn't be of concern. 

We ran from that appointment to our pediatrician's office for Matthew's 18 month 'well baby' visit.  It might have been a 'well baby' visit, but Matthew is still fighting some runny nose crud left over from the croup last week.  No major changes-- Matthew is in the 13th percentile for height and a fraction of a percentile for weight and head.  Matthew is doing great at being Matthew!  After 2 quick shots and 2 tears, we were on our way to pick up Jackson from a friend's house (thank you Kirsten!) and pick up Aly from school.   Just in time!  

Look What I Can Do

Darren found Matthew like this earlier today, while I found him like this just a few minutes ago. I guess we need to start putting the gate up at the bottom of the stairs!

 

Happy Labor Day

We've been enjoying our long weekend with family and friends. 

Unfortunately, I think the 3 kids are sharing 2 good moods.  On Friday, Jackson and Alyssa had the good moods, with Matthew being really fussy.  It took a while to figure out why, but I'm pretty sure it was because of the steroids he was on to fight the croup. Steroids always seem to give Matthew ants in his pants.  Thankfully the croup is gone and Matthew only needed 3 days of steroids instead of 5. 

On Saturday, Jackson and Matthew had the good moods, with Alyssa being prickly. I think she is just tired.  At the end of 2 great, but long, weeks of kindergarten she seems to need a bit more sleep.  Today she slept in (until after 8am) for the first time since she was a few months old. 

Yesterday, Matthew and Alyssa had the good moods, while Jackson was whiny.  I have no idea why, just that he woke up on the wrong side of the bed yesterday.  I'm crossing my fingers that we have found another good mood for today, so all 3 can be in a good mood at once.  Oh, that would be a fantastic end to our long weekend! 

Good news from the weekend--the Aggies won!

Matthew's Mixed Bag

This week has been a mixed bag for Matthew--

On the plus side:  
--He's taking more liquids.
--He's sleeping less (though that may be because we are really messing with his schedule).
--He had a pretty good 2nd day at daycare.
--He had the best blood draw ever on Monday and his C02 levels in his blood rose from last week to this week.
--His leg seems to be healing some.

On the not so good side:  
--His C02 levels are still lower than the nephrologist would like, so he has to have another blood draw in a month to check again.
--He had a rough first day at daycare.
--He still isn't putting a lot of pressure on his right leg, which is keeping him from standing and cruising.
--He woke up this morning sounding like Darth Vader--he has croup.  We went to the doctor to get a round of steroids, which is called for with Matthew's subglottic stenosis.  Now we pray that we can stay out of the hospital this go around.  

Definitely a mixed bag for baby Matthew this week.  

Matthew was motivated to stand for the Target bag,
which was full of baby food for him!