Small Things- Jackson Edition

It is the little moments that make life big. -unknown

Enjoying homemade ice cream with sprinkles.

Jackson is our little cuddle bug.  He loves to cuddle.

I went to check on Jackson after quiet time.  Before the camera woke him, he was sleeping with the patch on his eye.

Jackson with his 'Sonic the Hedgehog' hair, as he calls it.

Small Things- Alyssa Edition

Appreciate the small things, as when you are looking back, you may realize those were really the big things.  -unknown

Alyssa and Matthew hugging.
She is an amazing big sister.

Alyssa in my shoes.
I imagine some day she'll outgrow those shoes.

Alyssa at her Jedi Knighting ceremony after Jedi camp last week.

Alyssa taking on Darth Vader.

Alyssa with her shorter hair cut. 
Not sure when she got to be such a big kid.

Allergic Reaction

Last year when Matthew was having GI trouble, we took Matthew to an allergist, just to make sure that he didn't have any food allergies.  He was tested for the top 25 allergens, and didn't react to any of them.  But the test spot, where they inject histamine to see how he would react, was so large that the doctor told us that if he was allergic to something, we would know it.  We wouldn't think "wonder if he is having an allergic reaction" instead we would say "wow, he is having an allergic reaction".  And he was right on the money.  

Matthew is allergic to--- mosquito bites!  Fantastic!  Living in Houston, where it is mosquito season 11 months out of the year, it is not ideal to be allergic to their bites.  Poor baby Matthew!  He will have to be covered in spray anytime he walks outdoors.  

Matthew was bit on his ear, which made it big and red.

Other bites on his legs and arms swelled up to the size of my thumb nail.

My Extreme Sport

Just like my previous job would ebb and flow, I feel the same about my parenting role. Sometimes I feel much more competent than others.  Now would not be that time.  

First, I'm freaking out because I'm not learning sign language very quickly.  Foreign languages are NOT my strong suit, and signing is a foreign language.  I keep hoping and praying that Matthew will just up and start talking (negating the need for sign), but it hasn't happened yet.  And we have no idea when it will, if it will, and it is completely out of our control.  He needs more sign.  It is my job to help him communicate!

Then, I'm frustrated because Matthew just doesn't seem to understand when we correct bad behavior.  He doesn't seem to get it when we put him in time out or sternly correct him. Sure, sometimes it makes him cry, but it seems like he is crying because of our tone of voice or that he is sitting on the stairs by himself.  He doesn't seem to connect that his behavior led to the punishment.  How do I make him understand?!?

Matthew is unique and I have often joked that being his mom is my extreme sport. When Darren and I first watched the video of Alyssa and Jackson that I posted yesterday, the first thing we noticed was that Alyssa was the age that Matthew is now, and wow, Matthew is behind.  We don't notice that every moment of every day, especially given how much he has accomplished, but we are periodically reminded that Matthew has unique needs, and that poses unique challenges for us as parents.  I feel that is particularly true regarding communication and socialization right now. 

Days are Long

We are 3 weeks into summer break.  I won't lie-- it has been a little rough.  We've had a lot of fun, but it has also been exhausting and a bit frustrating.  The lack of a strict schedule (or a random schedule), lots of togetherness, and Matthew's terrible 2s are making us all a little antsy.  

With Matthew's unpleasantness when getting in the car, I am less motivated to go out and about, which makes Alyssa and Jackson grate on each others nerves more frequently.  Neither choice seems very appealing.  

It has been easy to get bogged down in difficult parts of the day, but there is a lot of good too.  Matthew walked all the way to the park and back on his own.  Alyssa has enjoyed curling up with a book to read for fun this summer.  Jackson has done his daily school work without complaining.  

I need to not get bogged down in the difficult parts and enjoy the bright points more.  As we were looking through the computer files the other day, we happened upon this video of little Alyssa and Jackson.  It reminded me again that 'the days are long but the years are short'.  Hard to believe that these little ones are my big kids.

Terrible 2s

Matthew has entered the 'terrible 2' phase.  There are some very sweet things about this phase-- he tries to be helpful and he is more independent.  But there are also some ugly things about this phase-- he loses his mind when he's told "no".  He lays on the ground and cries when we have to leave the library. He's into everything.  He leaves a swath of destruction wherever he goes.  He bites his siblings for fun.  He slaps at me when I put him in his crib.  He pulls my hair when I put him in his car seat.  He throws things he shouldn't throw.  He goes the opposite way when you tell him to 'come here'.  He throws a fit when he is confined in his stroller or car seat. Generally, he is still our sweet baby Matthew but he has been pretty difficult of late.  As a result, he has been spending some time in time out, though I'm not sure he ever understands why he is there to begin with.  

We are thrilled that he has entered this phase, as it is 'developmentally appropriate' and therefore a very good thing.  But even though it is a good thing, it doesn't make it any more fun or less frustrating for all of us.  

I have been thinking that Matthew's terrible 2s seem a bit worse than the terrible 2s we've seen before (and they seemed pretty bad then too), but I have been attributing that to my selective memory.  Then I was reminded that in actuality, Matthew's terrible 2s might be exacerbated by his inability to communicate.  Although he has a dozen signs and answers yes/no questions, he needs much more and I can only imagine the frustration he must feel when we just don't understand.  We are praying for patience, for this phase to give Matthew what he developmentally needs, for it to pass quickly, and for Matthew to be able to communicate his wants and needs!

Happy Father's Day

Happy Father's Day to my beloved.  Thank you for being an amazing, hands-on dad.  We may not show it as often as we should, but we are very grateful for all that you do for our family and we love you very much!

We are also very blessed to have so many great men in our lives that make us feel loved and cherished.  Thank you and Happy Father's Day!

As We Knew It

When Matthew was born and we began uncovering his uniqueness, we feared the life as we knew it was over.  We mourned the loss of our old, uncomplicated life.  And we were right-- life as we knew it was over.  

Matthew did completely change our life, just in not in the awful way we had imagined. He made our lives much, much richer. We are grateful for every moment we have been given, even if they aren't all rainbows and sunshine. Thank you, God, for giving us our sweet baby Matthew and for all of the blessings he has given us!

One of the great little moments-- Matthew playing in the driver's seat.

Looking Back

Every so often, I will scroll back in the blog and look at what we were doing at that time the previous year, or 2 years, or 3 years.  

3 years ago, we were returning from our last trip to Disney World. I am so thankful we went on that trip.  We had planned on waiting to go to Disney when the kids were older, but we had decided to go anyway with our dear cousin, her family and her friend's family.  How thankful we are to have those amazing memories as our dear cousin passed away later that year.  I will forever cherish that time that we had.  And coming home from that trip, we decided to have 'tres', otherwise known as sweet baby Matthew!

2 years ago, we were in the midst of baby feeding purgatory.  Matthew was screaming bloody murder instead of eating.  We were seeing specialist after specialist to find out why. And Matthew was diagnosed with intestinal malrotation.  The radiologist told us he could die because of it.  I cried and cried every day in the shower (the one place I allowed myself to fall apart and Aly and Jax wouldn't notice).  Matthew cried and cried when we tried to feed him. Thankfully, his wonderful surgeon fixed the malrotation a month later in Matthew's first of six surgeries but his feeding issues would remain until we later found out about his heart issue and fixed it.  Oh, how far we've come! Matthew eats like a typical kid and I haven't cried in the shower in a very long time!

Last year, Matthew was recovering from urology surgery.  I recently used some of the information I wrote on the blog from that day in our investigation with the VMC in trying to identify why Matthew's feet swell.  (Unintended benefit of blogging!) And I was fretting about Jackson's academic progression and getting used to having all 3 kids at home with me during a few days each week during the summer.  Both of those things seem silly now.  I hope when I look back to this year, I think the same of the 'big' things going on today.

Great Day @ The Museum

Yesterday Darren took the day off to enjoy a summer day with us and we celebrated by cashing in our Groupon to the butterfly exhibit at the HMNS.  We had a very nice time looking at the bugs and butterflies.  

Looking for the tree frogs

Even Matthew enjoyed the interactive features in the museum

Matthew pointing at a butterfly

Jackson watching the butterfly flutter (the yellow/black blur)

Alyssa pointing out the rice paper butterfly

The hours of shape sorting in therapy paid off at the play place outside the butterflies.
Matthew was able to put the wooden block in the hole on his own. 
I almost texted his therapist to let her know.

Great Day @ The Pool

Last week, Alyssa and Jackson took swimming lessons.  I was hoping they would pay off and yesterday they did.  We had a great afternoon at the community pool. Alyssa enjoyed spending her time diving in the deep end to pick up toys.  And after a slow and cautious start, Jackson was swimming on his own sans vest.  And while playing in the fountain, Matthew figured out how to stand up on his own (without pulling up on something or someone, for the first time, finally).  A great day for all of the Hoy kids (and parents too)!

VMC

A few months ago, I wrote about Matthew's unique little feet, how they swell, and to this point have been a medical mystery to all the doctors we've discussed them with.  We aren't overly concerned about them now, but want to make sure that this isn't something that could cause problems down the way.  Our most fantastic pediatrician has been helping us figure this out.  

First, they tested his urine. No protein, no concern about his kidney.  Good news.  Next, they did a lower extremity ultrasound.  No blood clots.  Good news.  Next, they did an echo.  His heart is healthy. Good news.  Then came the head scratch and "what do we do next?" Through his investigation, calling all around to find out who would be the right specialist to see, Dr. W was told about the 'Vascular Malformation Clinic' at TCH.  This isn't even listed on the TCH website.  Odd.  But I called the number he had given me and I got an appointment without having to jump through any additional hoops, which is unusual to say the least. 

That appointment was yesterday.  Matthew and I journeyed to the medical center (for the first time in what seemed like several months) and navigated to the 8th floor of the clinic building as we had so many times.  I went up to the check-in desk.  The receptionist had no idea what I was talking about when I said 'vasular malformation clinic'.  I was told that our appointment was on the 1st floor of main hospital.  Weird, I was told the 8th floor when I made the appointment.  So, Matthew and I went to the 1st floor main hospital, and the person at check in there told me that Matthew's appointment was on the 8th floor of the clinic building.  Ugh.  So, Matthew and I went back up to the 8th floor of the clinic building.  The same woman who sent me across the complex again told me she had no idea what I was talking about.  I had her call the contact number I had.  No answer.  I felt like I was trying to get access to a secret society and didn't know the super secret handshake.  Finally, a woman close by overheard our conversation and stepped in.  I must have said the password.  "Go through the green doors." I was given access!

After meeting with the nurse and doctor at the VMC and explaining Matthew's foot uniqueness, the doctor did another ultrasound of his feet, and didn't notice anything out of the ordinary.  She was saying that his symptoms sound vascular (instead of lymphatic) but the anomaly must be further up his body.  I explained that Matthew has 2 inferior vena cavas (instead of the 1 in most people) and I have pictures of it from his heart cathertization.  I also explained that at the time of the cath, those veins were a little more narrow than usual because the surgeon had to put a balloon in one to get the coil into his heart.  She thought that was very interesting and reiterated that it sounds vascular and that this might be the cause of the swelling.  

The plan is for Matthew to wear compression stockings to help the blood flow in his legs, and she will consult with the heart surgeon to look at the detailed pictures from Matthew's heart cath.  After that, Matthew will likely have a MRI to see the blood flow and also check the lymphatic system (to rule it out).  If the swelling is due to small veins, treatment may be as benign as 'wait and see' or it may require the more invasive angioplasty depending on the severity.  

Although we don't really know anything more than we did before, it was oddly comforting to be in the room with someone who seemed to be the right person to help us address this Matthew uniqueness.  This experience, as has meeting with my new ASL instructor, has reminded me of the Holland story-- these are people we would have never met if we had landed as planned in Italy, but as we are in Holland, we are so very thankful for their placement in our lives.

Matthew waiting for the super secret handshake.

Matthew Distraction

Since Matthew started walking, he has despised his car seat.  He has a serious hatred of it.  He is often a total nightmare to get in the car seat and sometimes the car ride is horribly unpleasant.  So much so, I started limiting trips with Matthew about a month ago.  "Hmmmm, I really need to go to the store, but no way am I going to put Matthew in the car seat again today.  We can do without." It has just been ugly, but I do understand it.  If he could talk, he would tell me "Mom, I need to MOVE."  He wants to perfect his new trick--walking and running.

After a month plus of this unpleasantness in the car, I enlisted the help of Alyssa and Jackson to help me distract Matthew as we get him in the car. We joke that Matthew is going to sit on Alyssa, that Jackson is going to sit on Matthew, and so on.  So far, that has worked pretty well and the kids are really getting into it.  Today's 'Matthew distraction' is my favorite thus far.  Alyssa and Jackson came in through the front seat and made funny faces at Matthew...and Matthew made funny faces back!  He stuck his tongue out and put his hands on the side of his face.  It felt so 'normal' and so wonderful.  And I got Matthew buckled up without him noticing-- a wonderful win for today!

Start of Summer

So far, summer is shaping up to be fantastic!  We've had a water balloon fight with neighbors, we've gone to a kiddie water park with friends, Jackson went to his best buddy's birthday party at Chuck E Cheese, we celebrated the end of the tball season (and likely end of Jackson's tball career) with his teammates, we celebrated Alyssa's year of good school behavior with ice cream, and have just enjoyed time together.   It has been a good first 5 days of summer!

Aly enjoying the water balloon fight

Jackson thought it was great too.

As did Matthew.
He stood near the balloon cooler and loved to throw them on the grass and watch them pop.

First afternoon of summer!

They loved the kiddie water park and playing with friends.

Matthew loved it too and he didn't want to leave.

Jackson had fun celebrating his best buddy's birthday.

Alyssa's celebratory ice cream.

I think Jackson liked the t-ball trophy more than he liked playing.

Miracle

A year ago today was Matthew's last surgery.  Wow!  

In the time that Matthew was having surgeries every 2 months, I dreaded meeting new people.  I didn't have what I would consider a good 'elevator answer' to the question "what do you do?".  "I used to have a pretty good job, but I quit because my youngest son was born with health issues and we spend a good amount of time at doctors' offices and nights in the hospital."  I'm pretty sure that would have been a conversation killer.  There is no benign elevator answer to what life was like during that time.

Today, I don't have that dread, but I realize that people that are seeing Matthew for the first time probably see him much differently than I do, than our friends and family do, than do all that know his story.  These new people see Matthew and may notice that he is different.  In addition to his bright blue eyes, his joyful smile, and his sweet personality, they may notice the braces on his feet, or him drooling a bit more than a 2 year old should, or his asymmetric ears, or the unusual way he holds his right hand, or that he signs instead of speaks, or his 4 fingered hands.  They may wonder what is wrong with him. They may think he is 'unique' or maybe 'special needs' or maybe even 'retarded'.  They won't be awed by his walking, or that he's communicating, or that he's playing like a typical kid.  They won't know that he's had 6 surgeries, that he just learned to walk 2 months ago, that he's 1 of 2 in the world with his diagnosis, that he's cheated death multiple times, and that he's blazing his own trail.  They don't know that he is a miracle.