Saturday, July 30, 2011

Casa Della Tires

Alyssa and Jackson love the movie "Cars" (and now "Cars 2").  So, at Walmart this morning, they decided to create their own Casa Della Tires (the tire shop from the movie).  They would have spent all day playing with the tires if we had let them. 

Friday, July 29, 2011

Pediatrician Visits

Jackson had his 4 year well visit with the pediatrician yesterday.  All is well...except his enormous tonsils, which are going to have to come out.  Yep, this year we are paying for our ENT to get a new car.  4 ENT surgeries on 3 kids in 2011.  Thankfully we have hit our family deductible and this should be uncomplicated for Jackson.

Today I took Matthew in to the pediatrician to discuss the issues that have been concerning us of late (his excessive sleeping, sweating, decreased liquid intake, etc).  I'm hoping I'm just being paranoid, but the pediatrician thinks we are being prudent.  It sounds like Matthew's heart.  But we did a strep and mono test, both came back negative.  We had a chest x-ray done that indicated that there is no fluid buildup in the lungs and no change in the size of the heart from the last x-ray.  (Good news) But Matthew's pulse oxygen levels are low for him (they were 95-96%, which is the low end of normal but Matthew is usually 99-100% even when he is struggling to breathe) and Matthew's hemoglobin levels are elevated. 

So, it sounds like something is going on with Matthew, we just don't know what it is yet.  The pediatrician would like us to get into the cardiologist before our August 9th date, so I've called and left message with Dr. P's assistant in hopes they can work Matthew in before the 9th.

I keep trying to rationalize away all of these things (e.g. maybe the 2 pulse oximeters used were off, maybe Mattie is going through a growth spurt, maybe his new meds cause his hemoglobin numbers to go up, etc.) but it is becoming harder to rationalize all of these things away.  I feel like we did a year ago-- there are a dozen pieces in front of me, and I'm not sure if it is even a puzzle, and if it is, is it one puzzle or more than one?  I'm praying hard that this is just all concidence.  We appreciate the continued prayers for our sweet baby Matthew!

Wednesday, July 27, 2011

Paranoid or Cautious

Lately, my mommy alarm has been quietly clanging.  I'm hoping it is a false alarm and I'm just being paranoid.  Matthew has been sleeping a lot (16-18 hours/day) and sweating more than usual for him (and when others aren't).  Now, maybe he's just going through a growth spurt and it is the middle of the summer.  Hopefully it is just that.

I will feel a lot better after cardiology tells me I'm being paranoid.  So, even though Matthew isn't due for a cardiology follow up for 6 more months, I've made an appointment for him. I'm quite happy to say that we are going to see the cardiologist from TCH that fixed Matthew's heart in the cath lab last October.  I had incorrectly assumed that this cardiologist was only in the cath lab, but to my relief, he sees regular patients too.  He knows Matthew's heart--he has seen it.  He knows how dire the PDA was. He experienced Matthew's atypical venous structure. He saw the small aortic arch.  He saved Matthew's life...literally.  I am so thankful we are going to be seeing him in 2 weeks!  My alarm is clanging but I don't believe that Matthew is in danger like he was last year.  I so pray the cardiologist tells me I'm just being a paranoid mommy!   

Tuesday, July 26, 2011

Gastroparesis Meds

We've been fretting and trying to figure out what to do about Matthew's gastroparesis meds.  A 14 day supply was a little pricey (a brand name, with no generic).  We called the GI-- no alternative, this medication is the first line med for Matthew's slow gastric motility issue.  We called the pharmacy-- no generic or alternative. (cost=full price)  But thankfully when I picked up the script, our wonderful pharmacist filled 28 days for the single co-pay. (cost=1/2 as much)  And when I called the insurance company-- no alternative, but they should be able to fill it via mail order at a discounted rate, that is if the GI's annoying nurse can figure out how to get the script written correctly for it. (cost=1/3 as much) Much easier on our budget! Now, hopefully the medication will work for Matthew! 

Monday, July 25, 2011

Summer Slipping Away

4 weeks from today Alyssa goes to Kindergarten.  5 weeks from today I teach my first class for the Fall.  I am so very excited!!

But Summer is slipping away.  And as excited as I am for Alyssa to go to Kindergarten and to start teaching again, I'm a little sad that I won't have as much one on one time with my sweet baby Matthew.  For the last almost year, my job has been caring for Matthew.  Some days it has been Matthew and Jackson, other days its been Matthew, Jackson and Alyssa. But everyday... it is Matthew.  As I said before, he's my perfect little companion.  In a given week, I spend about 24 hours alone with him.  In 5 weeks, with Alyssa in Kindergarten where she'll be coming home earlier than she did in daycare and my teaching, that time will be cut to about 9. 

Though that makes me a little sad, I feel very lucky that I've had this opportunity to spend that time with Mattie (and Alyssa and Jackson too).  And the sadness is quickly replaced by excitement when I think about the big things about to happen for Alyssa, me and even Matthew (who will be spending 12 hours a week in daycare, watching and hopefully learning from his typically developing peers).  

Saturday, July 23, 2011


During Matthew's gastric emptying scan, I had an hour and 10 minutes to do nothing but watch Matthew sleep, reflect back upon our journey with Matthew and pray. 

Being in TCH always brings a flood of memories that I typically keep deep in my memory, and this time was magnified as I listened to the music of the CARE channel (as I've done for at least part of every hospital stay) and watched my sweet baby Matthew sleep (again, as I've done for at least part of every hospital stay).  

I reflected upon...

...the first time I heard Matthew's heart beating as I laid on our couch, with my midwife holding the doppler.
...the day of his birth.
...our scary first night at TCH.
...surprise after surprise about Matthew and his anatomy. far he's come, doing things we didn't know whether he'd ever do.
...the fact that the last several months have been relatively uneventful considering the previous year before. thankful I am that God thought Darren and I were worthy to be Matthew's parents. fortunate we are to have Alyssa and Jackson and our supportive family and friends. 

Friday, July 22, 2011

Gastric Emptying Scan

Matthew and I journeyed to TCH for his gastric emptying scan with nuclear medicine earlier today.  His GI suggested this because Matthew has been throwing up solid foods.  I had all but convinced myself this would be a waste of time, because Matthew doesn't throw up baby food or milk, and well, we've had a good run lately with very few Matthew surprises. 

Today started early, with Matthew being awoken at 5:45a to a spoon of baby food in his face.  He was NPO (nothing by mouth) from 6am on, so we tried to get as much food in him as we could in that 15 minutes.  By his 11:00 appointment, he was tired and hungry and had become quite cranky.  He finally was able to take the radioactive formula at 11:45 and he sucked it down so fast I thought the bottle would invert upon itself.  Poor sweet Matthew, little did he know that the injustices were just beginning.  Next they strapped him to the table with fabric tape.  He couldn't move anything but his head.... for 90 minutes.  For the first 10 minutes, he screamed.  For the next 5, he screamed a minute and sucked on his paci a minute. For the next 5, he screamed a minute and sucked on his paci 2 minutes.  Then he fell asleep for the next hour and 10 minutes of the test.  I thank God every day for his sweet disposition! 

Next, we headed home and awaited the call from GI with the results.  I expected the test to come back "normal" and we'd go to the next test.  What was I thinking?   Of course, Matthew has delayed gastric emptying.  At his age, his stomach should empty in 60 minutes.  Matthew's takes 150 minutes.  There is a medicine the GI recommends to aid in motility (making the muscles move the food through faster), but our pharmacy doesn't stock it (so they have ordered it) and it is an off-label use of a name brand antibiotic (so our cost is quite pricey).  When we found this out, it was already 5pm on a Friday. We are planning to call the GI Monday to see if there are any other alternatives.  We hope there will be and that something that will work for our sweet baby Matthew!

Thursday, July 21, 2011

Random Bits

-Last night Darren had a work happy hour/dinner, so I let Alyssa and Jackson pick whatever they wanted for dinner.  Alyssa= yogurt, blueberries, apple and cashew nut clusters; Jackson= yogurt, left over pizza quesadilla, apple.  Not sure what I expected, but it wasn't that!

-Matthew has started tucking his hand in the neck of my shirt when I carry him. A twist on Napoleon.  If he keeps doing it, I'm going to need to wear prettier bras in public.

-We've been a little lax with Matthew's foot braces.  Knowing he really only needs them when he stands, I make sure he has them on when he's in the exersaucer or when we are working on his PT exercises.  Other than that, they've been off.  I feel like we'll be more motivated when he starts standing on his own, but know we need to start getting him in them before then to help him stand on his own.  This process has made me glad we were motivated to keep the helmet on him when his head was being reshaped.  Otherwise I'm sure we would have been more lax about that as well.   

-When we returned from vacation, our yellow lab mix had a stink that I can't even describe.  We've washed her, washed her crate, etc and we can't get rid of her funk.  Not good. 

Wednesday, July 20, 2011

Always Something

A week ago I expected that this week would be quiet.  Ah, I should have known better. 

At my dentist appointment last week, I found out I needed a filling.  So I got that done on Monday.  Then Tuesday, Matthew and I both came down with a cold.  For me, it came on like an allergy attack, but now I'm pretty sure it is a cold.  Matthew's cold has manifested in a different way...with a 103+ fever.  Poor little guy!  My wonderful beloved took the day off on Tuesday to care for us sickies, as well as Jackson and Alyssa.  Thankfully today, I am starting to feel better, so hopefully this is a quick moving ailment. 

It's always something! 

Monday, July 18, 2011

Nice Weekend

We had a very nice weekend with family and friends.  Friday we saw Grandma (Darren's mom) and went out for dinner.  I feared that going out to dinner wouldn't be as nice and relaxing as I wished, but we went out with some friends, and that distraction made it very enjoyable (with the 6 kids- ages 5y, 4y, 4y, 1y, 3mo, 3mo).  Saturday we finally unpacked from vacation and saw Granny and Granddad (my folks).  Sunday we went to the Astros game with the same friends.  It was a great time! Thankfully I think the kids are starting to lose their vacation crazies, which made the weekend even more enjoyable!
Since the Astros are in last place, there were plenty of open seats.
Jackson kicked his feet up while enjoying his chicken & fries.

Friday, July 15, 2011

Vacation Crazies

Alyssa and Jackson have been a handful this week. I'm going to say it is from vacation letdown, or at least I hope it is.  They have been complaining, whining and generally being on edge. Coming down off a great vacation is hard.  I just want to eat a lot and do nothing, so I guess it is understandable that the 4 year old and 5 and a half year old are having a little trouble adjusting to the every day routine.  Hopefully next week will be easier!

Wednesday, July 13, 2011

Week of Appointments

This week feels a lot like a week a year ago.  Matthew had/has 2 therapy appointments and 1 GI appointment, I have a dentist appointment and a follow up appointment with my general surgeon, Jackson had to visit the doctor, and Darren has a doctor's visit.   Whew!  Thankfully these weeks are few and far between now. 

Jackson has been fighting something the last 3 weeks.  After hearing him sound progressively like Darth Vader, we took him to the pediatrician yesterday.  He has a sinus infection and tonsillitis.  As Dr. W said "his tonsils are ginormous!".  Hopefully Jackson will kick this soon and his tonsils go back to normal.  I really hope we can avoid the ENT!

Matthew's GI appointment went pretty well.  Dr. L was happy with Matthew's weight gain, since he's holding steady on his own growth curve, but is concerned with the issues Matthew has with solids.  Matthew will eat a few bites of solids (like pasta or beans) and after a handful of bites, will throw it all up.  Dr. L has a few things he wants us to investigate.  First up, Matthew is scheduled for a gastric emptying scan on July 22.  The outcome of that test will determine next steps.  It has been a while since we've had to play detective with Matthew's systems.  We are hoping we can find a quick answer and easy fix!

Although this week feels like a week last year, looking forward, next week looks pretty quiet overall with only 1 therapy appointment and the gastric emptying scan.  Definitely an improvement over last year!

Tuesday, July 12, 2011

We Must Be Crazy-Again!

Just like last year, taking 2 preschoolers and a baby on a road trip isn't really a 'vacation', it is just taking kid care on the road.  Though, even with that, this year was much easier than last year, hands down!  What a difference a year makes!  We had a total blast on our 2nd annual 'We Must Be Crazy' road trip. 

First we stopped by my best friend's place near Indianapolis where we visited the children's museum.  We all enjoyed the extensive dinosaur collection at the museum and we had a great time catching up as well.  Although I talk to her several times a week, I didn't realize how much I missed seeing her in person until I did. 
Debra, Alyssa & Jackson
I shed a few tears driving away, but couldn't be sad too long, as next we headed north to Michigan where we enjoyed 5 days on Round Lake along with 18 of our extended family.  The first night there, the kids walked in the lake with their clothes on.  From then on, it was a challenge to get them out of the lake. Well, except when we'd take the pontoon across the lake to get ice cream.  On the 4th, we let the kids stay up late to enjoy the fireworks and catch fireflies (which aren't found in Houston).  They had a blast!  The entire 5 days was fantastic!  A huge thank you to Uncle Gary and Aunt Peggy!!
Aly and Jax feeding the ducks w/Uncle Jerry

Aly and Jax rowing the boat with Uncle Gary

Jackson shoveling the sand

Jackson driving the boat with Uncle Mike
(on the way to the ice cream shop)

Alyssa and Matthew in the lake
Our final leg of the trip sent us over to Chicago to spend a few more days with our extended family.  We adore spending time with them-- these people are so much fun, we'd want to spend time with them even if we weren't related!  Our final day in Chicago we celebrated Jackson's 4th birthday, sad that our time was ending but distracted by the joyous activity.
Alyssa and Jackson at Cars 2
It was a perfect vacation, full of friends, family, and fun!!  Well worth the 2750 miles in the car!

Sunday, July 10, 2011

Happy Birthday to Jackson!

Our Jack-Jack turned 4!  We celebrated his birthday on Friday in Chicago with a bunch of family.  First, we saw Cars 2 (which, in Jackson's words, "was great!"), then we had a confetti egg fight, we enjoyed pizza and cake, and then went outside to catch fireflies.  It was a ton of fun!  Happy Birthday, Jackson!

Thursday, July 7, 2011

Bad Guys

Jackson has a real affinity for bad guys.  He roots for Darth Vader from Star Wars, Chick Hicks from the first Cars movie, Scar from Lion King (really?!?!) and so on.  I laugh now, but sort of wonder if this should concern me.  Jackson has a heart of gold, and hopefully he isn't destined to be the 'bad boy'.  
Jackson with his 'bad guys'. 
He is pretending the dinosaur is the ship,
Mater (the tow truck in the dinos mouth)
is the Emperor with his Star Wars characters
protecting him.

Sunday, July 3, 2011


Matthew received his foot braces last Monday.  He is easing into wearing them, kind of like the helmet, to make sure they don't rub his feet wrong.  So far, he is not impressed with the new foot attire.  I cant blame him, until now he went bare socks, no shoes...for the past 16 months of his little life.  Now he has to wear socks and these plastic things and a pair of shoes.  Though in Matthew style, he was crying and unhappy because of the braces, but when I pulled out the camera he was all smiles.

Friday, July 1, 2011


When I think about how many systems on Matthew are atypical-- how he has two inferior vena cavas, 1 kidney, missing thumbs, no radial pulses, throat issues, heart anomalies, feet issues, non-rotated intestines, etc-- I'm amazed at how typical Matthew really is.  There is almost no system on him that is completely typical, yet he eats baby food, drinks from a bottle he holds himself, he is mobile pulling himself from room to room, he smiles, he laughs, he cries, he claps, he waves, he does almost everything a slowly developing typical 9-10 month old would do.  All with his atypical systems.  It is just amazing!!