Updates on Eli and Isaac, too!

Thanks to all of you who were praying for us and thinking of us last week with all of Eli's appointments. Here's a quick summary of what we learned:

First appointment was the swallow study, and it went GREAT!  Eli can now drink liquids by mouth again!  The speech therapist that did the study wants us to thicken the liquids slightly for about a month, and then wants to see him again for another swallow study to see if we can stop the thickening.  I was so proud of my little man- he took right to the sippy cup, like he'd been drinking from it all along!  I had just bought Isaac some new, bigger sippy cups... and I was thinking Eli could use the smaller ones that Isaac just graduated from... but, Eli likes the big one.  He looks so cute and funny drinking from it because it's really almost the size of his head!  But he loves it!  And so far it seems his favorite thing to drink is water.  He's only taking 1-3 oz of water or milk at a time, so we still have to supplement with the formula in his g-tube, so he doesn't loose weight.  But we are just so thankful to learn he can take liquids by mouth again!  And hopefully over the next few months we'll have him on full oral feeds and no g-tube feeds.  That's a very big goal... but we can dream, can't we?  And, we are talking about Eli Gannon here... the boy who consistently surpasses everyone's expectations.

Next we went to the NICU follow-up clinic for some developmental testing, and for Eli to continue to be a part of some special research studies due to him being a micro-preemie.  This was a really long appointment- we were there about 3 or 4 hours- I kept keeping track towards the end, so I didn't loose my mind.  We already knew that Eli is still behind in a lot of milestone areas, but the developmental testing they did confirmed just how behind he currently is.  The doctor suggested that we add weekly occupational therapy and speech therapy for him.  I'm glad for him to get the services and therapies that he needs to grow and learn and thrive... But he already has 2 other therapy appointments every week... Now it looks like we will have 4.  And I have to be honest- it makes me tired just thinking about it.  But, it's all going to hopefully help him catch-up and be the best that he can be... so we will do it, and we'll be as happy as we can about it.  Attitude is everything, right?  Eli is my best example of having a good attitude- no matter what, he's always sweet, and content.  I learn so much from this little guy.

We also learned about his muscle tone at this appointment.  His lower extremities all look good, and his arms look good- which were my areas of concern, so this was good news to me.  The problem areas are his stomach muscles and back/shoulder muscles.  He has low tone in his stomach, and high tone in his back/shoulders.  This is what makes him hunch over a little bit at times when he is sitting up- the weak stomach muscles.  And this causes his to have poor balance, making him not want to reach very far out to get toys, etc.

The next day we went to the eye doctor.  We learned that Eli's vision is very poor.  We already knew he was nearsighted, but this day we learned that his eyes are -10 (left) and -15 right.  Anything over a -6 is considered "severely nearsighted," so clearly, Eli's vision is really bad.  The doctor explained that things more than a few inches from his face are very blurry to him.  This also explains his poor balance and lack of interest in things that are very far from him... he can't see them!  So we ordered him a pair of brown rectangular shaped frames- the lower pair seen in the picture you see here.  They come with a matching strap that will help keep them on his head, and I think the strap is wrapped around the middle of the frames here, so the nose piece isn't actually that big... But anyway... they should arrive sometime next week.  The are a special, safe, durable type of glasses designed especially for kids.  The few friends I have with kids in glasses all unanimously suggested these (Miraflex band), as well as the 2 ladies helping us at the eye wear store.  We are very excited for him to get his glasses- we feel it will open up a whole new world for him, actually being able to SEE!  And that his development will really start to take off over the summer.

Also, we've had great success weaning him off of his oxygen since Saturday!  We are beyond excited about this and so hopeful that he really is weaning off for good this time!  (We had started weaning him off at the end of April, but he was sick for most of May and had to go back on with a heightened amount for a while.)  He's 16 months old, and he's been home from the NICU for almost a year... and I really just can't even believe that we might actually get to be O2 tank-less in our home!!!  It's truly a dream come true for the Gannon family!  I will update more on this (and post pictures) once we get official doctor's orders to be off of O2, and make the call to the medical supply company to come pick up all of the tanks and equipment, FOR GOOD... :)

Ok, don't want to forget about Isaac... because he's got some pretty big news of his own... He's WALKING NOW!!!  He's been taking 2-4 steps on his own for about a week now... But as of this weekend he can walk across the room- it's usually to get a toy or food that he wants :).  I'm SO proud of him.  Chris and I were lying in bed last night looking at pictures of him on our phones, from when he was first born... and we just can't believe that same baby isn't really even such a baby anymore...  We are SO thankful for his health and progress! (Ok, and maybe we are a little sad, too, at how quickly he seems to be growing up!)  Enjoy the video taken on Chris' iPhone this evening! ( Sorry for the poor quality...)