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 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 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


  1. What awesome updates!!! Hooray for walking and allowing himself to be laid down to sleep. That's wonderful.

    No more tube feeds!!! Whoo hoo

    I need to see some Liam-walking spam, LOL!!

  2. What a great update! I think it is wonderful that everything is going well with getting Liam off the tube and into a more normal routine. YAY!!! Praying that he keeps making great strides!

  3. Great updates! It's amazing how fast things move along for them once they hit that 18 month mark. It's like...our babies aren't little anymore. They are like little men!