Friday, April 29, 2011

Like a Switch

Besides making an amazing recovery (just in time!), Matthew did a few other great things in the hospital and at home since. 

Matthew is scooting forward.  If motivated, he'll propel himself forward while on his belly.  Still a long way from crawling, but we are loving the forward progress!

Matthew is playing peek-a-boo. He'll pull a blanket over his head and pull it down and smile.  He played peek-a-boo with me from around a mirror for a good 30 minutes one day.  He has achieved object permanence (he knows something is there even when he cant see it).  It is so great!

Though Matthew still doesn't look for me when we ask "where's mommy?", he has been reaching up for me to pick him up.  Almost nothing makes my heart melt faster!

Matthew is playing with a ball.  He'll pick it up and drop it.  He tries very hard to bite on it. Sometimes he'll roll it forward.  It's pretty great to watch him play.

Matthew's development seems to be like a switch. One day he can't do something, and the next he can.  We wonder how much of his progress is us working with him (and the physical and speech therapy) and how much is Matthew being developmentally ready for whatever he's going to do next.  Not that it really matters, we aren't going to just sit by and wait to see.  We want to help him to that next step, whatever (and whenever) that may be. 

Thursday, April 28, 2011

Pay It Forward Day

Today is Pay It Forward dayI love this simple idea! 

Step 1- Do something nice for someone.
Step 2- Expect nothing in return. 
Step 3- Hope that they do something nice for someone else. 

Alyssa celebrated today by gifting some of her Easter candy and pencils to her classmates and an apple to her teacher.  Her friends were overjoyed by the little surprise this morning and it made Alyssa so happy to give them joy. 

The boys and I celebrated by leaving quarters at the machines (riding toys, candy machines, etc) at the various stores we visited.  Jackson wasn't near as jazzed about the idea as Alyssa and I were, but he acquiesced. 

I read about a group of women pooling their money to buy a gift card to a coffee house, giving it to the barista, with the instructions to use it on everyone who comes in until the card runs out and to hand out the 'pay it forward' notes instead of a receipt.  The group sat back, drank their coffee, and watched as the happiness spread.  What a great idea!  I would have loved to do that, but Jackson really isn't into sitting at a coffee shop for very long.  I needed to break it down to a preschoolers version and I couldn't think of a better way than leaving quarters at the kid coveted machines so others can enjoy.

Every day should be pay it forward day, and today was a nice reminder that the little things do matter.  Plus it feels so good to give to others!  (Especially considering all we have been given!)

Wednesday, April 27, 2011

Why I Blog

We originally started this blog just for us, to record the little things going on in our lives that we don't want to forget.  We got busy and stopped doing it...until Matthew was admitted into the NICU at 2 days old. 

At that time we had told our family and a few friends that Matthew was born with some very unique characteristics, but we didn't know really how to tell everyone.  In those very scary first hours in the hospital, I wrote up what I wanted to tell our friends and family. I contemplated sending it via email and then thought...the blog.  I'll post to the blog and that will keep the email traffic down. 

Over that 8 days in the NICU, we realized the great value of the blog. It served as our main communication tool with our friends and family as information came fast and furious. It helped us organize our thoughts. It was a great place to keep track of all the information we were getting.  After we left the hospital, I contemplated whether to keep posting.  I decided that even though life had calmed down a bit, the blog still served all of those purposes.  And there have been times in the past year plus where life was a little more chaotic, and in those times, blogging made me take a deep breath and think "how will I explain this to others".  Blogging has helped me process all that has gone on. 

I get a report in the stats about how people find our blog through search.  Every time I see that someone has found us by looking up '4Q chromosome duplication', I rejoice.  I love that we have a record of our family life this past 14 months, but more so, I'm glad to be telling Matthew's story.  Being that he is 1 of 2 in the world known with his particular chromosome duplication (and probably only 1 out of 100s with a duplication on 4Q), I wish there was more information.  How I would love to know more about other children with 4Q.  I'm glad Matthew's story is out there for others to see.

I'm always humbled to find out that people actually read the blog.  Thank you for continuing to follow along our journey with Matthew (and Alyssa and Jackson too). We are so very appreciative of the love and support we've been given! 

Tuesday, April 26, 2011

Warrior Dash

The Saturday before Matthew went to TCH for his 5 day stay, we were in Dallas so Darren could run the Warrior Dash.  Basically it is an event combining running with obstacles.  From the site:  "Warrior Dash is a mud-crawling, fire-leaping, extreme run from hell."  Its a 5k, running across a ravine, barrel rolling over mesh, balancing on boards, climbing up walls, jumping over fire and crawling under barbed wire through muddy water.  Everyone ends up with mud in every crack and crevice.  To help with that, the contestants are hosed down with a fire hose at the end.  And you get a fuzzy viking helmet to boot!
Darren post-race.
The atmosphere is beyond fun. People dress up.  We saw a Captain America, Batman and his girlfriend Robin, a guy dressed in a Hooters uniform, a guy in just his Spiderman underwear, and many, many more interesting sights.  They have bands playing, beer to drink and festival food to enjoy.  My only complaint is spectators can only watch the start and finish.  The course isn't set up like a golf course allowing for viewing.  Bummer.  I would have loved to watch.

Besides Darren having a great time running, the kids and I had a great time hanging out with Uncle Bryan and his friends.  The course was in a paintball area, and there were unpopped paintballs that entertained Alyssa and Jackson for hours.  They also enjoyed sharing the gigantic turkey leg and grilled corn.  The kids had a blast throwing the football with the group and goofing around with the adults.

Alyssa and Jackson having fun w/the unpopped paint balls

Alyssa really liked the corn.
This year, I feel like having 3 kids (with one of those being Matthew) is enough of an extreme sport for me, but maybe next year I'll feel differently.  Everyone who ran did seem to have a really good time! 
It would have been an even better time if Mattie had been 100%.

Monday, April 25, 2011

Happy Easter

Happy Easter, a day late!  We had a great weekend celebrating by visiting with friends and family.  I'm still awed that Matthew was home for the weekend!  It was the greatest feeling to be together!  

Spending time with friends on Easter.
The 18 of us at Easter brunch. It was too fun!

Today Matthew had a follow up with his pediatrician and all is well.  Lungs are clear. Heart sounds great.  Ears are clean.  And after 10 days, today is the last day he'll be on steroids.  He is healed.  He is such a strong little guy!

We are so thankful for our friends and family that took care of us this past week by caring for Aly and Jax, feeding the family, visiting us in the hospital, helping Darren plan for the weekend, and for praying for and sending well wishes to our sweet baby Matthew!  We cannot say thank you enough, but again, thank you!!

Friday, April 22, 2011

Option A

Today could have gone two ways....

A.  Matthew improved and we go home.
B.  Matthew didn't improve.  The ENT takes him to the OR to scope his throat.  Because he has to be intubated again with his severe case of strider, he likely spends 24-48 hours intubated on a breathing machine in the ICU.  Who knows what happens from there.

I am elated that today was option A!  I'm not sure I've ever been more relieved to be home.  I can't even explain how great it feels!!

The ENT still questions whether Matthew's throat might be anatomically unique (hmmm...wouldn't surprise us), making him more prone to strider.  So he will scope Matthew's throat when Matthew goes under for his urological surgery scheduled for early June.  If they find something they need to surgerically fix during that scope, they will schedule time. If they find that Matthew's throat anatomy is such that it makes him prone to strider, then we'll likely have to stay overnight anytime Matthew undergoes a procedure where he needs to be intubated.  If they find nothing, we'll do a happy dance. The good news is they didnt have to scope today (while he has strider) and they can scope the next time Matthew has to be intubated (two birds, one stone). 

Oh how right Dorothy was...there is no place like home!  Thank you to everyone who thought and prayed for our sweet baby Matthew.   We are blessed to have such an amazing support system.  Thank you!!

Good Friday

The power of prayer is great!  With prayers and the well-wishes, Matthew is almost fully recovered.  Over the evening and through the night, he started making the recovery he needed to avoid the OR, a breathing tube and the ICU.   We are even going home today!  It is an amazingly Good Friday!!

Thursday, April 21, 2011

Optimistic and Not

What do Matthew and I do all day while at the hospital?  Pretty much what we'd do at home.  We eat, sleep, play with his toys, play peek-a-boo, sing songs, dance around the room, and cuddle.  While Mattie naps I catch up on the going-ons in the outside world through the internet (thank goodness for technology) and watch a few minutes of mindless tv. 

There are a few notable changes to our home routine though. We are in the confines of these 4 walls of room 1430 at TCH.  No fresh air.  Matthew only has the width of his crib to roll around.  I stare at him through the white bars of the crib.  We are visited (and often awoken) many times a day/night by nursing staff and doctors.  My primary job, besides general baby care, is to keep Matthew calm since the strider worsens when he's upset.  I watch his pulse oxygen and heart rate monitor. I listen intently to him breathe.  I pray...a lot.

Today I vacillate between thinking Matthew is on the road to recovery (and home) one moment and fearing we aren't in the next.  He gives me reason to be optimistic as his strider doesn't sound as severe.  In those moments, I'm hoping we'll be able to avoid the OR and go home tomorrow.  But he also gives me reason to not be so optimistic, like now when he is needing to work too hard to breathe while he is napping. I was hoping for nothing but steps forward that lead to home, but alas, we are on the roller coaster instead.  Not sure what this means for the day(s) ahead. 

Today Must = The Day

I feel like Matthew is making improvement.  He seems to respond really well to the breathing treatments, he's able to go a little longer before he needs a treatment, his strider doesn't sound as high pitched, his oxygen saturation is outstanding, and when he has retraction it doesn't seem as deep.  All that said, he still isn't better.  He still needs the breathing treatments. He still has retraction.  He still sounds bad.  Poor sweet baby Matthew!

Today is the day Matthew has to get better!  If he isn't better by the morning, he'll be back in the OR so our ENT can scope his entire throat.  Though it is indicated for this prolonged case of strider, the procedure could further irritate his throat and buy him a night or two in the ICU.  So, today has to be the day he gets better!!  Thank you for prayers and well wishes for our sweet baby Matthew!

Wednesday, April 20, 2011

Step Forward

This morning we were told that if Matthew needed breathing treatments more frequently than he got them yesterday, we were going to be moved to the ICU.  So, I was a little nervous when Matthew wasn't doing well about 2 hours after his treatment this afternoon.  The respiratory therapist almost called it and gave him a treatment at that 2 hour mark.  Since that would mean a move, I asked her to hold off, to see if Matthew could improve on his own.  He had been napping, was laboring to breathe, and was drenched in sweat, but I had hope that he would be able to make it to the 3 hour mark.

And Mattie went above and beyond.  He took a 4 hour nap and woke sounding like he did yesterday (which was an improvement over last night and this morning). He didn't need a treatment for 5 hours.  I'm encouraged that he might have taken that step forward again.  He isn't as recovered as I would like, but I'm praying that he keeps the forward momentum! No going back please! 

Thank you for the continued prayers and well wishes for our sweet baby Matthew.  We are blessed to have such amazing friends and family.  Thank you!!

Step Forward, Step Back

Matthew is still fighting with the strider.  I was hopeful yesterday was our turning point, but Mattie struggled through the night and this morning.  I do think he sounds better than he did at his worst, but he's about the same as when we arrived here.  The treatments still help, but you can hear his breathing within the hour and within an hour and a half can see him sucking in air and pushing it out (retraction).  And when he coughs, it takes him what feels like forever to catch his breath.  Poor sweet baby Matthew.

Our ENT visited us at 6a this morning.  His assessment is that Matthew looks good, sounds bad, but a little less bad than 2 days ago.  He recommended another dose of steroids and keeping Matthew on the breathing treatments every 3 hours.  We will definitely be staying here at TCH for another day. If Matthew is still here Friday, the ENT will likely take him to the OR to take a better look at his throat.  Oh please, oh please don't let us be here Friday!

Some random notes from our visit so far:
*Matthew is practicing clapping his hand together.  He won't clap with me yet, but he's getting there!
*With the amazing amount of steroids in Matthew's system, he's going to have to postpone his pro-ball career ambitions for now.
*Hospital food is still not good, and it disappoints me this is the food they feed to the kids who need to get better/be healthy. 
*Every time I shower here at the hospital, I am glad that I was able to give birth at a birthing center or at home (no hosptial stays). Oh how I miss my shower from home!
*I hate hearing the sound of life-flight taking off, but I'm thankful we live in a place that has such a thing!

Tuesday, April 19, 2011

Forward Progress

I think Matthew is turning the corner.  He responds so very well to the breathing treatments that you can't hear him breathing for about an hour after (big improvement over the last few days).  And when he does labor to breathe (usually after 2+ hours after the treatment), it doesn't seem like he is laboring as hard (the retraction isn't as deep).  So, I think he's made some forward progress this afternoon!  I'm hopeful that this trend will continue.

We are so thankful for all of the prayers and well wishes for Matthew.  We owe so many so much for all of the support we've been given.  Words are definitely not enough, but thank you!!

Holding Steady

Last night I felt like Matthew had taken a step back.  This morning, I think he's at least back to where he was and I was hopeful that he was making forward progress, but as I started this post, he started laboring to breathe again (right at 2 hours post treatment).  So, no major forward progress...yet.

The cultures came back and Matthew has parainfluenza 3, a leading cause of croup. He is the unluckiest baby.  The croup + the intubation Friday = severe case of strider. 

Though it doesn't change the course of action, the diagnosis put the doctors' at ease that we are on the right path (more breathing treatments).  As long as Matthew needs the breathing treatments, we will be here in the hospital. When he doesn't need them any longer, we will have a conversation with the doctors about how long he will need to be observed before we go home.  Though I want to be home, we do not want to leave a moment before we are sure Matthew has this beat. 

While Matthew and I are here at TCH, Jackson and Alyssa seem to be having a good time visiting with friends and family (many, many thank yous to the Randolphs, Renns and Kempers!) and Darren is keeping the household moving forward.  The cute report from home this morning is that Jackson 'tested' (texted) me on his 'ipod' (his etch and sketch) before going to school.  That gave me a warm fuzzy this morning, as did Matthew's improvement compared to last night.

Tough Guy

I have never seen someone work so hard to breathe as Matthew did last night.  He is by far the strongest person I've ever known.  He was using every muscle in his body to get the air he needed.  His oxygen saturation rates were great, but his little muscles were shaking on every inhale and exhale, he was drenched in sweat, and you could hear him breathing from down the hall.  Since it was just over 2 hours from his previous treatment, the on-call doctor was called in and his breathing treatments were increased to every 2 hours as needed.   I was scared for him, but moments after his breathing treatment, Matthew was rolling around in the bed, playing with his rattle. 

Through the night Matthew has needed the more frequent breathing treatments.  With the treatments today, he'll get another dose of steroids and we'll continue to pray that he can finally conquer this.

Matthew is a tough guy who has been through so very much in his short life. 

First it was the intestinal malrotation.  Matthew's intestines were twisted, making it difficult to pass food through his GI tract.  After a several hour surgery, where they opened him up, took out his intestines and reinserted them into a different pattern, he waited 4 days for his intestines to wake back up from their slumber and start passing food again.  Oh, and they nicked his urethra inserting the foley catheter during that procedure, which made him bleed and unable to pass urine for a few days.  Matthew battled through it all.

Then Matthew was in congestive heart failure.  We spent months trying to figure out what it was, because he was too puggy to be a 'heart baby' and his oxygen saturation levels were too high 'for it to be his heart'.  But it was his heart, he's just a tough guy.  Because of the heart defect from birth, his heart was sending 4x the amount of blood to his lungs as through the rest of his body.  His heart had been overworked for 7 months.  When they went in to fix his overworked heart, he was slow to wake and struggled to breathe after the heart catheterization.  And Matthew battled through it all.

Then Matthew's skull was starting to pinch his brain.  They cut out part of his skull, reshaped it and put it back in.  He bled profusely while on the operating room table.  His head was swollen and unrecognizable for a week.  And Matthew battled through it all.

So, now he's fighting a swollen throat.  He's battling through it as well.  He is our sweet baby Matthew, but he's also one tough little guy!

Monday, April 18, 2011

No Change Afternoon

Matthew's condition has remained largely unchanged today.  He responds well to the breathing treatment, which lasts about 2 hours and then he labors to breathe until the next treatment.  In the 2 hours post treatment, he'll even smile a quick smile, play with his toys, or enjoy a game of peek-a-boo. 

Though Mattie is working hard to breathe, he's compensating for it and holding his oxygen saturation levels high.  He does better when he is sleeping. He does worse when he is eating or fussing.  He has particularly hard time when he coughs.  The difficulty coughing has caused him to throw up a few times.  Not fun. 

The doctors seem a bit stumped.  They are starting to think that he has croup, that coincidentally came on 2 hours after surgery.  (Call me doubtful, but either way I don't care as long as he gets better!) As our doctor left this evening he said "Lets hope for the best tonight and I'll see you tomorrow."  Not encouraging. 

Yesterday I hoped we'd be home today.  Today I hope we'll be home by the end of the week, though I'd be thrilled if Matthew dramatically improved tonight.  I'm looking forward to being home, but much more, I'm looking forward to Matthew being fully recovered.  Thank you for the continued prayers and well-wishes for our sweet baby Matthew!

Good and Bad Morning

The last 12 hours have been a mixed bag.  Thankfully we did get sleep, albeit in blocks of two hours at a time.

The good--
*Matthew's oxygen saturation levels have remained high.  This is very good news!
*He's eating pretty well.
*Although not himself, his sweet disposition is shining through. 

The not so good--
*The doctors assessment this morning= no visible improvement from yesterday.
*Matthew is still laboring to breathe, despite the breathing treatment every 4 hours and multiple doses of steroids. 
*His heart rate is dropping down pretty low (similar to the bradycardia he had after the heart cath).  Not sure why this is.
*Sounds like today is more of the same...breathing treatments and steroids. 
*Doctors aren't sure why he's still struggling. 

So, unless he makes a remarkable improvement in the next few hours, I think we're going to be here for a while.  My poor, sweet baby Matthew.  How I pray this just goes away!!

Sunday, April 17, 2011

Rarely Simple

Friday I wasn't pleased with Matthew's breathing, but I wasn't overly concerned since he didn't seem to be struggling to breathe like he was in the recovery room post surgery.  So, we packed up the car and headed for Dallas for the night (more on that in a different post).  Matthew's breathing still sounded bad, but he wasn't really struggling...until we were driving back to Houston on Saturday night.  He had deteriorated to the point that we were concerned, and Darren dropped Matthew and I off at the ER clinic on the way to our house. 

The ER doc determined Mattie was still suffering from strider and gave him a breathing treatment and a steroid shot to help.  He sounded better for a bit, but before we left the ER, Matthew started to have labored breathing again.  So, we got another breathing treatment and we were sent on our way.

Matthew awoke in the middle of the night sounding bad again but he slept on and off through the night.  I called our pediatrician this morning to follow up, and by the time we got to their office, Matthew's breathing was again labored.  The on call pediatrician took one look at him and ordered another breathing treatment and an ambulance to transport Matthew and I to Texas Children's. 

We spent a few hours in the ER at TCH with another breathing treatment and another steroid.  With no considerable improvement, Matthew was admitted for continued treatment and observation. 

The ENT probed Matthew's voicebox, which isn't injured but is swollen.  We will remain here until Matthew doesn't need the treatments any longer, as the meds can only be administered in doctors' offices or hospitals.  All the doctors seem stumped that Mattie is still struggling. I don't think they understand that Matthew does everything his own way, and it is rarely simple.  Please pray again for our sweet baby Matthew.  Thank you!!

Friday, April 15, 2011

Nose Repair

Matthew was first up on the schedule this morning for surgery.  The repair of his nose was to take about 10 minutes. He went back to OR on schedule and I was called into the recovery room about 30 minutes later.  Matthew was still asleep when I got back there, so he took a little longer to come out of anesthesia than typical.  Thankfully though about 10 minutes later he was awake and in my arms. 

About an hour later we were told we could go home, but something in my gut said no.  Matthew's breathing sounded labored to me and though the ENT, anesthesiologist and the nurse said it was okay (he would be congested because of his nose), I didn't want to leave and the nurse said we should stay till I felt comfortable.  Within about 10 minutes, Matthew was turning purple and couldn't get air.  The anesthesiologist came back and yep, his airway was swelling shut (not uncommon after intubation).  After a breathing treatment, Matthew seemed more comfortable.  We waited our required 2 hours and headed home. 

When we got home, Matthew's breathing sounded worse again. I called our pediatrician who recommended we go to the ER.  But on the way to the ER, Matthew's breathing sounded better and he drifted off to sleep.  So, I brought him back home and called the pediatrician back.  We were given the okay to wait and see, and will head to the ER if his symptoms return.  We are praying that it just gets better from here!  Our poor, sweet baby Matthew.  Rarely is anything simple for him but he continues on with a smile!

Thursday, April 14, 2011

ENT Update

Matthew has been his normal, happy self through this nose break ordeal. Besides the hour crying immediately following his tumble, and an occasional cry out when he bumps his nose (like when he rolls on to his stomach in the middle of the night), he's smiling and calm.  And though you wouldn't know he broke his nose from his attitude, you can surely can tell from looking at his face.  His nose is bruised, swollen, and a little off center. 

Matthew saw the ENT today. The majority of a baby's nose is made up of cartilage, with a tiny bit made up of bone. Of course Matthew fell and broke the bone. He's just one lucky kid! Surgery is scheduled for tomorrow morning. We are praying that it is a quick and easy fix, as expected. 

I joked that last year we were paying for our pediatrician's new car.  Well, this year I think we are helping our ENT get one!

Wednesday, April 13, 2011

Following Tradition

Following a long standing Hoy kid tradition, Matthew took a tumble off our bed yesterday.  But in Matthew style, he did it up right.  There was only about a foot of the bed he could maneuver around, and he found that spot and dived in under a minute.  He bloodied his nose and cried for a while.  Since Alyssa and Jackson have performed this trick before, we figured all was well.  Just a little blood and swelling.  Then his nose bled some more in the afternoon. And then some more this morning.  Hmmm...that doesn't seem okay.  So, I called the pediatrician who told me to go to the ER. 

So at 8:30a, Matthew and I ventured over to the new Texas Children's- West Campus ER.  The whole way I was hoping I was just being a paranoid mom, that they would say that his nose was just bruised.  I parked in the very front row.  We were the only ones in the waiting room at 9am.  I thought 'Great! We'll be out of here in no time.'  After going through triage and over to an exam room in record time, we waited. And waited. And waited.  We were finally seen by a doctor at 11:30.  I had started to wonder if they forgot that we were there.

Doctor saw Matthew and said "hmmm...nose looks broken."  The CT scan confirmed-- broken and dislocated nose.  Matthew does everything big!  After 6 hours in the ER, we didn't get anything but a diagnosis.  We see the ENT tomorrow for next steps.  If it needs to be surgically repaired, it will likely be on Friday.  Hopefully this will be a quick and easy fix for our sweet baby Matthew! 

Tuesday, April 12, 2011

How Far I've Come

I often think about how far we've come in the past year plus when I look at Matthew, marvel at his development in the past few months, or revel in full night's sleep.  I was reminded yesterday how far I have come in the past year. 

A year ago, the thought of having all 3 kids on my own (like when Darren goes to his weekly church meeting) would strike fear in my heart (at worst) or be an annoyance (at the least).  Somehow in the last year, that feeling has completely gone away.  3 kids on my own= no problem!  And the thought of taking all 3 of them to the store on my own used to be unthinkable, now I wouldn't give it a second thought. 

Jackson, Alyssa, & Matthew reading a bedtime story together.
I worried how I would adjust to staying home with Matthew full time. I left Accenture 6 months ago and haven't looked back.  I love being with Matthew. I used to struggle a little on Tuesdays/Thursdays when Jackson and Matthew were both home all day.  Now I look forward to those days.  Jackson, Matthew and I have a great time together. 

Jackson 'driving' the bus at the outlet mall-
this Tuesday's outing with the boys
I'm not sure if it is because the kids are older (and easier) or if I just finally adjusted to life with 3 little kids, but it is nice to think back and be happy with how far we've come. 

Monday, April 11, 2011


As we considered going to the children's festival this past weekend, it made me think back to a year ago.  Last year we took the 6 week old Matthew along with Jackson and Alyssa and had a great time at the festival. 

I remember thinking at the time last year that besides Matthew's eating issues, we were doing well.  It was when we thought we had some simple surgeries in Matthew's future and everything else was wait and see.  Ironically, we haven't even gotten to those simple surgeries yet because we found the malrotated intestines, the major heart issue, and the craniosynostosis.  Those took priority.

Thinking back to that day, I get a little nervous. I thought we were doing well and I had no idea what was to transpire over the next months.  Right now, I think we are doing well.  It is the best it has ever been. Am I being naive to be so optimistic?  Are we due a surprise around the corner?  I sure hope not!

A year ago, Matthew's eating issues let us know that something was amiss.  What keeps me so optimistic now, and keeps me from really worrying about what is to come, is that Matthew is eating and sleeping well. And though a moment of worry creeps up every so often, I remain optimistic for Matthew and all of our futures!

Sunday, April 10, 2011

Another Great Weekend

We had another great weekend.  Fish fry on Friday night.  Darren worked concessions at Special Olympics on Saturday while I took the kids to their Spring festival at daycare.  Saturday night we celebrated my mom's birthday with a cookout at my folks house where the kids ran around, ate more food than you'd think they could, and rode their bikes.  Sunday we decided against going to the Children's Festival as we had planned (though we had a great time last year!) to have a quiet day around the house and to go see Darren's folks Sunday afternoon where the kids enjoyed playing w/legos, cars and dressing up.  No part of the weekend was really noteworthy, but it was totally fantastic! 

Jackson on his Spiderman bike

Saturday, April 9, 2011


Just when I fear that Matthew will be developmentally disabled in an area, rather than just developmentally delayed, he gives me hope.  The first example was walking. I had started to wonder if Matthew would ever walk.  At 1 year old, he wasn't putting any pressure on his legs.  But a month later he surprised me and started standing (assisted), which gives me hope that in time he'll walk. 

In the last post, I commented that Matthew is most delayed verbally.  I had started to wonder if he was going to be non-verbal.  Just last week, he was making only the same noises he has since he was a few months old.  Hard to explain in words, but it was a throaty cry.  Even his joyous noises and laughter sounded that way.  And then Matthew surprised me late this week by making new longer throaty, no longer like crying.  He's giving me hope that in time he'll talk.

Since Matthew started making these new noises, he has found his voice.  Oh has he! He is always making noise, loud noise.  And for the first time since he was born, he is annoying Alyssa and Jackson. "Shhhh Matthew. I can't hear!"  I keep trying to explain to Alyssa and Jackson that he needs to make these sounds.  That he is learning to talk.  That before he can ever say their names, he needs to learn how to make the sounds.  His yelling is a VERY good thing. 

I thought our life was crazy loud before...ha, I was wrong! And I can't be more thrilled about it!

Wednesday, April 6, 2011

Half Milestone

Matthew is a little developmentally delayed in all areas, but he is most delayed in language acquisition.  We've been working twice a month with an early language specialist and working with Matthew every day on words and sign language.  And he's making some progress! 

His latest is waving hi/bye.  Though he hasn't mastered both lifting his arm and moving his fingers to wave, he does attempt to wave back.  He can either lift his arm OR move his fingers (if you lift his arm for him).  Hopefully soon he'll figure out how to put the two things together.  He has to work so very hard for things that typically come easy for babies.  But he does work that hard and even though it is not the whole wave, we rejoice in the forward progress! 

Tuesday, April 5, 2011

No More Warts

Today Alyssa had the warts on the inside of her nose surgically removed.  Although it is a very simple procedure to have done, the ENT wanted to put her under since she had 3 warts in various places inside her nose.  And since she needed anesthesia, we had to venture down to TCH. 

Alyssa was a trooper. She patiently waited the 2.5 hours before she went back to the OR.  She answered all the doctors' questions.  She listened intently to the child life specialist who showed her the tools they would use (the mask, the iv, etc).  And when she went back to the OR, just as instructed, she looked at me and said "see you later alligator".  She woke up from anesthesia in record time, ate her popsicle, drank her sprite and said "I'm ready to go home."  I only knew she had been drugged by the funny and frequent observations she was making.  "That light is pink and sparkly. It is beautiful!" "Sprite tastes just like the 7-up I drink at Granny's house, but it is in a different can." "I don't have warts anymore, do I?" etc.

I'm all too familiar with the waiting room on the day surgery floor at TCH.  So much so that when we walked in today, I realized they had rearranged the furniture and the guy at the desk said "you look familiar. Have you been here before?" Way too familiar but thankfully we weren't there too long.  

Less than an hour after she went back to the OR, we were heading home.  And other than suffering from some post-anesthesia nausea, Alyssa is doing great.  No more warts. And we are praying they will stay gone!

Alyssa watching the ipod with her puppy
waiting for her turn in the OR.

Monday, April 4, 2011

Wonderful Weekend

When we were in the midst of surgeries, feedings where Matthew screamed his head off, helmet fittings, etc I couldn't imagine that life would become normal again, that we would fall into a routine and life would be good.  But life is good! 

This weekend was full of normal, fantastic things.  We went to fish fry at church on Friday night.  Saturday morning I went running with my No Excuses running group while Darren worked on the '66 Mustang.  Then friends from Austin came over for lunch.  We cooked out and it was great to catch up with them.  After which we played outside at a neighbor's house and then we had date night on Saturday night.  Sunday morning Darren ran and then we headed to my folks house for lunch and playtime out there.  Sunday afternoon we went back over to the neighbor's yard.  Everyone was thoroughly tired by bedtime on Sunday night!

Throughout the weekend at the neighbor's and my folk's houses, Alyssa learned to ride her bicycle without training wheels and Jackson learned to ride his bike with training wheels (before he would only ride his tricycle).  Our dear neighbors loaned us their balance bike and after less than a day playing with it, Alyssa was off on her own bike.  I've been telling Alyssa she has to learn without training wheels to ride to the big school in the Fall.  So when she rode up to me yesterday, she said "I'm ready to go to Kindergarten now."   It was a delightfully normal, wonderful weekend! 

Jackson earned tractor time by riding his bicycle. 

Alyssa on the balance bike.
She said it was more fun than the tractor.

Matthew enjoyed petting Max (my folks' dog)

Alyssa riding her bike sans training wheels.

Sunday, April 3, 2011

Morning Routine

Thinking upon it, I really enjoy watching my kids wake up in the morning. 

Jackson's almost always the first one up.  You can hear him plodding through the house, holding the stuffed animals he slept with the night before, and as he approaches us he says "my alarm clock turned green".  Who knows how long he's been awake and waiting for his alarm clock to turn green so that he can leave his room.  Then he'll always ask "is today a school day?"  to which he'll reply "Yah-hoo!" if we say no and "Oooooh" with a frown on his face if we say yes. 

Usually Alyssa follows behind.  She comes in quietly and looks around the room like she's a bit confused as to why she's awake and in our room.  She takes a long time to get fully awake.

And then there is Matthew.  He usually wakes up crying and when you go to pick him up he's got a furrowed brow.  But 10 seconds later, he's either smiling, rolling around on the bed, or taking a bottle. 

I don't think any of us are what you'd call 'morning people' but I don't think I consider us 'morning adverse' either.  I guess that is good and I'm relishing the little morning routine we've gotten into now, as I'm sure it will change as the kids get older.  As everything else will too.

Friday, April 1, 2011


I love spring...the greening of the grass, the blooming flowers, the sunshine, the pleasant weather and BASEBALL!  Hope springs eternal! 

Our blooming azaleas, pretty for 1 week
and stringy, unattractive, and anemic looking
for the other 51 weeks a year.