5.19.11 - Busy = Picture Post!

We are busy BUSY this week, which I'll explain on another post, so I'm going to show off some fun pictures from Mother's Day morning spent with family!  I'll be back SOON!  Promise =)

Sweet boy!

We are running now!

Playing in the fountain...searchin for coins!

Playing bigger-than- life-size checkers

Checkmate!

5.13.11 - 5 months

5 months.  I believe this is the longest stretch since Liam's birth that we have not been to the ER or in the hospital.  

I've been contemplating a lot about the past year and all the ups and downs we have faced.  I guess because I know it's getting close to another "surgiversary".  This time last year I was making preparations for Liam's full repair surgery...Getting caught up on my work, paying off the round of hospital bills from his tube surgery and making hotel reservations for surgery night so we could be close by just in case...What a difference a year makes.  This year, we are making plans for our first family vacation, planning summer outings and taking daily walks to the park.  I guess I am feeling overwhelmed at the goodness and grace of God...of how great things are right at this moment in our lives.  Amazing things are happening even amidst our friends and family, and all I can really say is that, yes, we are truly blessed, deeply humbled and so grateful for this peace and quiet waters we are now experiencing.  

I never expected to SEE God answer so many prayers in my lifetime, nonetheless so many even within the past few months.  I truly stand in awe.  Not a day goes by that I don't stop and think about the Grace we have received...in more visible ways than ever expected.


"Praise the Lord, oh my soul 
And glory to the King 
Forever you are robed with majesty 
We come to You oh Lord 
And lay our praise at you feet
How great is Your love 
So much higher than the heavens 
With faithfulness that reaches the sky."

Lyrics by Mercy Me, "How Great is Your Love"

5.7.11 - Liam's new do..and other things!

Liam got his first official buzz cut today.  Not sure if I ever even posted his first official "hair cut"...was a couple months ago.  I have video, just need to find it!  Anyways, his hair was getting more "mullety" everyday, so we just decided to buzz it.  I must say I miss his long hair =(  But I know it will keep him cooler in the summer without all the hair.

Liam and his new favorite toy...his golf set!  Daddy has been teaching him early!

We decided to splurge this year and buy a season pass to our local waterpark.  Since the heat and Liam don't mix very well, I still wanted a way to be outside, but that would be a cool way to do that here in the hot Texas heat.  And since Liam is free until he turns 2 and I'm home now, I thought this would be the perfect summer to go.  Plus, it's literally about a quarter mile from the house, so no high gas prices for us!

We met with the dietitian yesterday and she was amazed at how well Liam is doing and VERY surprised that we had already weaned him off the tube feedings.  He weighed in at 24.2 lbs, which is great and means he hasn't lost any weight.  Our plan is to continue what we are doing and try to work in some more whole grain and fiber to his diet.  Liam has never liked grain or carbs too much, but she gave me some things to try.  Since we have cardiology at the end of the month (with weight check), the dietitian will return in two months.  And the feeding pump, well I'm happy to say it's been collecting dust in the corner of our office awaiting pick up....YAY!  I couldn't be happier to see that thing disappear!  We have been tremendously blessed that the feeding has gone so well.  Usually, this kind of thing takes awhile as kids adjust to normal eating/drinking cycles and struggle with aversions.  We are very fortunate and I thank God for this blessing.  Liam is truly a little miracle, in every way!

Well tonight's plan include a Mother's day dinner at one of my favorite hibachi restaurants!  Yummo!  Liam will be spending the night with his cousins.  Tomorrow will be church and then to my parents house for Mother's Day lunch....Days couldn't get any better than this!!  Happy Mother's Day to all my special mommas out there! 

Going golfing!

5.4.11 - A quick update

Our Internet has not been working at our house, so thanks to Mimi and Baba for lending me use of their computer so I can do a quick post!

Liam woke up this morning and looked dusty to me...I have not noticed his color in such a long time, but this morning he looked a little grey.  He was breathing fine, no wheezing and otherwise his usual self, so I kept an eye on it.  He had a tiny bit of congestion, so I bulb suctioned him and he seemed to get a little more color back, but still not his usual pinkness.  So I decided to call the pedi's office to schedule an appointment this morning just to be on the safe side...and then I called 20 minutes later and canceled because I had convinced myself I was crazy and he was fine (as he was more pink by then and eating and drinking very well).  Then after his nap, he woke up a little dusty again...strange, so I thought I'd better be safe than sorry and call the pedi's office again to see if I could bring him in.  Long story short, Liam is fine.  Pulse ox was 97, blood pressure was normal, no ear infection, no teething, no fever.  Whew.  I still feel a little silly for taking him, but given our track record, I guess I did the right thing. 

On another note, I am over at my parents house mainly to drop Liam off for the night and all day tomorrow.  I am going to my first dental cleaning appointment in over 2 years...Yes, I know.  Shame on me.  But then again our past two years have been a LITTLE busy and consumed with the obvious, so I guess I can give myself a break.  Although my teeth didn't.  I am having the "deep cleaning" "root scaling" and "planing" done tonight on all four "quadrants" of my mouth.  Yuck.  I HATE strongly dislike going to the dentist.  In fact, I went a couple weeks ago for jaw pain and I left needing a deep cleaning...Guess it's my time to start taking care of myself again.  UGH.  Really not looking forward to it...

That's about it for now.  I'll try to post more later if our Internet gets back up and running!  Happy Wednesday everyone!

4.28.11 - Easter and Updates

Easter weekend was great.  We took a trip down to San Antonio to see Dustin's side of the family.  It's always so much fun to get together with his family.  We don't get to see them very often, but it's like you pick up right were you left off and we just always have a great time. 

We had an Easter egg hunt on Sunday with all the cousins and Liam had a blast (with no nap that day until 4 when we left to drive back!).  He completely wore himself out, but was all smiles and giggles.

Cousin Kayla was his helper so mommy and daddy could capture the moments via photo and video!

Liam is just walking up a storm!  He is EVERYWHERE, even trying to run sometimes (which never ends well for him...poor thing usually always falls when he gets going too fast!).  He still scoots around some when playing and when he's outside, but he follows directions well when we have to tell him to stand up and walk!  I think sometimes he actually forgets he can do that now!

And for the feeding, it is going well.  We have remained off the tube for more than a week and things are going really well.  I still have to supplement his fluid intake sometimes with water through his tube, but he is taking in all calories by mouth.  I also started the Carnation Instant Breakfast to supplement calories and he seems to like it.  His weigh-ins this week show he is still right around 24 lbs., give or take a few ounces and I'm praying the new home scale we bought is accurate.  I weigh myself first, and then weigh us both together and subtract my weight.  The lowest reading for his weight I've ever got is 23.2 lbs.  Which still isn't too bad considering how much more active he has become in the midst of weaning.  The dietitian will be her next Friday for an official eval so we will see then if we are able to keep chugging along.  I am planning on possibly having her come out more frequently, since our doctors visits lately (thus weight checks) have been few and far between. 

The only part about the feeding process is what Liam eats.  It still bothers me that there are not a lot of high calorie food options that are riddled with high fat, salt or sugar.  Since Liam doesn't eat a large volume of food, every bite counts for him calorie wise.  And while I do still feed him a balanced meal (meat, veggie, grain) I feel like bites of the good-for-you stuff are wasted bites because they lack calories....frustrating.  I know I'm probably not alone in my feelings over this, it's just never what I pictured for feeding my child.  I was reading an article today about the diet for people with congenital heart disease and basically, we are doing everything opposite of what the article recommends.  I know I can't get too worried about it.  Hopefully, this is a temporary stage of food choices!

I also thought I'd share some pictures we received from Liam's helmet appointment.  They emailed us a collection of comparison photos for the time frame he had his helmet for (9 months!).  It is pretty cool to see him grow up through these photos and see how great the helmet worked!

Pretty amazing what they can do these days!  Just glad we were done before the summer, so we didn't have a case of the smelly head this year!! 

4.22.11 - Walking!!

On this Good Friday, thought I'd post a little video of how awesome Liam is doing with his walking skills...It is a GOOD day!!

4.20.11 - Steps to our new normal

I just cannot believe how far Liam has come along this year.  He is already walking EVERYWHERE, as it is now his preferred method of transportation, finally!  He is eating and drinking great and talking non-stop.  We have also stopped the tube feeds, ALL of them =YAY!  His eating has increased, and when we trialed stopping his extra fluids, his drinking also picked up and increased.  We have the dietitian coming back out in 2 weeks, so I am praying for a good follow up and hopefully at least maintaining his weight.  It is a little more difficult since Liam is much more active than he was when we started, but as far as our scales show, he is holding steady.  My next step is to introduce some Carnation Instant Breakfast or Pediasure to make sure he's getting the nutrients he needs, as well as a multi-vitamin...And to my moms out there, any suggestions for a vitamin supplement we should try?  I would love to do chewables, but a lot of the children's ones I feel may be too hard for him to chew right now....Need to do some research!

And for the walking...wow he has just taken off!  We have been working on getting him to stand up on his own from the middle of the floor (not pulling up on anything) and he has finally got it down.  It is strange to see his little self toddling around now!   He loves to chase our cats and is learning to climb the furniture, although he is still a little too short to get up on his own. 

We have changed his naptime routine and bedtime routine to go without the nap nanny.  Oh how I loved that thing, but am glad we have been nap nanny free for the past few days now.  The nap nanny was used for his tube feedings, but since we stopped, we haven't use it.  We used to put Liam down for his nap and bedtime on it so we could feed him, but don't need to anymore.  The change, even in his sleeping pattern, has been for the better.  He goes down for nap and bed with no tears or fuss....I am just amazed.  I thought it would be a slow transition, but I actually think he was getting tired of the nap nanny too.  We can even lay him down at night and WALK OUT OF THE ROOM!  We have always had to stay and lay down with him til he fell asleep, but not anymore...it is wonderful!  I finally feel like we are slowly finding a sense of normalcy.  It is such a blessing to be able to do the basic, simple things with your child that normal children do...I don't ever want to take it for granted. 

Our next cardio visit isn't until the end of May, but I feel pretty comfortable that everything is going just fine in his little heart.   We also have a BIG trip planned soon.  Probably won't post on it until we are home again (for safety purposes), but we are really excited.  It was the trip we were supposed to take over Christmas that had to be postponed due to his surgery.  So all of his big milestones couldn't have come at a better time.  I thank God for everything He has done in our life and Liam's.  He is truly a FAITHFUL and LOVING God, whom I am blessed to serve.  And for this Holy Week, what better way to give thanks than to give Him all the praise and glory for everything He has done for us!



"And Jesus Christ our Lord was shown to be the Son of God when God powerfully raised him from the dead by means of the Holy Spirit. Through Christ, God has given us the privilege and authority to tell Gentiles everywhere what God has done for them, so that they will believe and obey him, bringing glory to his name." (NLT) Romans 1:4-5

4.17.11 - Early Easter!

We celebrated Easter early today at BaBa and Mimi's house (my parents).  Not sure Liam got the idea of collecting eggs, but rather he preferred to put them into the basket and dump them out, and repeat over and over.  He is growing up so fast...He was in his big boy outfit today (aka collared shirt) and he just looked so grown up.  He has come SO far in the last few months, its blown me away.  More updates on his progress later this week, but for tonight here are some EARLY Easter pics!  I'm off to go order some cute photocards =)

4.13.11 - I'm back!

I'm back finally!!  I think this may have been a record amount of time between posts...Funny because I looked back at last year's happenings around this time of year and I said the same thing!  Must be a busy time!  Last year I was sick with a very bad sinus infection/cold which eventually led to Liam getting sick, which then postponed his repair surgery until summer.  I remember it like it was yesterday.  So glad we are in a new year with a new fix to his little heart!

My trip to St. Louis was great.  I really miss my cousin, so it was great to see her and my little second cousin.  I should have taken more pictures...I have a couple I snapped with my iPhone, but that's it.  Kinda mad at myself for that....oh well.  Liam and Dustin managed to survive have a great time without me.  Liam was exhausted come Monday, and actually fell asleep during his lunch time Vital-Stim therapy session...and then slept for 2.5 hours.  I was a little concerned, because sleeping too much is never a good sign with a heart kiddo (and he has never been known to nap that long...ahem, nickname "No-Nap Johnson").  And yesterday he took an almost 3 hour nap.  But today he was back to a normal nap of an hour and half, so my worries were short-lived =)  Thank goodness!

Really nothing new is going on around here.  Liam is continuing to eat well and drink from his sippy cup.  We are down to 1 tube feeding at night.  I am considering returning the feeding pump.  It's just one more piece of equipment we really don't need.  We gravity bolus his juice and water into his tube during the day with a giant syringe, so I am planning on doing that for his nighttime feeding as well.  Initially, he was put on the pump because he couldn't tolerate large volumes going in during short amounts of time, so the pump handled that dilemma.  But now, I think we can manage without it, since we only use it once a day.  I figure I can even bolus his nighttime feeding in two parts if needed.  So the trial run of this may start tomorrow!  And since our insurance doesn't have good DME coverage, the sooner we can return it, the less expense we have to pay out of pocket.  I hate that we have to re-consider things because of insurance. 

On another note, I actually missed Liam's last helmet appointment today.  Totally forgot.  I have NEVER done that before.  Maybe it was the beautiful weather we had today, as we played with bubbles outside during his scheduled appointment time!  I didn't remember until this evening!  I felt so bad....I even remembered this morning, but when afternoon rolled around, slipped my mind! 

More post to come later this week!  Happy Wednesday!

4.4.11 - Well-check and updates

Liam's 18 month well check visit with the pedi was this morning.  Of course, worries about his weight were at the top of my concerns, but I was pleasantly surprised at how the appointment went.  Liam was only down a few ounces from 4 weeks ago when we started the wean, to 23 lbs. 12 oz.  but remains in the 20% percentile.  He was up more than 2 pounds from our last pedi visit back in January and she is very pleased with where he is at right now.  She also explains that most kids around this age up to age 3 actually start losing some weight because they become more active.  So the fact that Liam has gained anything was really good.  Especially since we can now consider him a "toddling" toddler!  Our goal for weight for our next visit when he is two is 26 pounds.  She also said as long as we feel comfortable and have someone overseeing the weaning process, we can move forward as we see fit.  YAY!!

I just can't believe we are so close to coming off the tube.  If you would have asked me two months ago if I even saw this in our near future my answer would have been no.  Liam has just blown me away with all the progress he's made in a relatively short amount of time.  Plus, he continues to do well despite that fact he has probably sprouted about 6 teeth in the past 3 months and now is getting some molars coming in.  Plus, we had our first experience with some allergies the past couple weeks and hasn't been sleeping very well.  All in all I am pleased! 

So the next step is to cut out one more feeding so we will just have the one tube feed at night.  I think the nighttime one is going to be the hardest to cut out.  The first thing he does when he gets up (even earlier than before we started weaning) is ask to eat.  I think it's going to be a challenge to get him to eat more at one meal time, especially at dinner time.  In fact, one day last week, he woke up at 2:00 am and kept signing to me he wanted to eat.  He was WIDE awake.  Mommy was not too happy, but nonetheless, I gave him a hot dog, he ate a few bites, said he was done and I put him back down.  He fell right back asleep until morning.  STRANGE.   I was praying so hard that he was not going to start a habit with that!  So far, so good.

This is going to be a busy week for me.  I leave Wednesday to go visit my cousin in St. Louis for a few days.  It will be the longest I've been away from Dustin in awhile and Liam ever.  It will be good to get away for a few days though and I am really looking forward to seeing my cousin.  We are very close and she is like a sister to me.   My parents will have Liam a few days while Dustin works and then Dustin will have him over the weekend.  Our nieces are going to come over this weekend to help out play also, so I know Liam will have a blast.  Thank goodness for Facetime on iPhone though!!