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Thursday, April 28, 2011

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!! 

Friday, April 22, 2011

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!!

video

Wednesday, April 20, 2011

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

Sunday, April 17, 2011

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 =)












Wednesday, April 13, 2011

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!

Monday, April 4, 2011

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!!