Important Appointments for Eli- Prayers Appreiciated

Next week we have a several important appointments for Eli coming up.  Wednesday, he will have a second swallow study done, now that he is able to sit up on his own (finally!).  If you remember (or never knew in the first place...), Eli failed a swallow study back in November, showing us that he could not properly swallow liquids (this is also called aspiration).  This is what caused him to have to get a feeding-tube placed directly into his stomach November 5th... and since then he has only been taking baby foods by mouth, no liquids.  And they told us then that we could repeat the swallow study once he was sitting up on his own, to see if he had advanced and matured enough to swallow properly.  So please pray that this is successful!  We would love to be able to offer him a bottle or sippy cup!  Especially since it's SO HOT outside- we worry that he's so thirsty often times.  We can put liquid straight into his tummy through the g-tube, so he doesn't get dehydrated... but, I know it would feel so good to him to get to have a drink in his mouth!  I just pray that he can swallow liquids properly now... and if so, that he will be interested in drinking from a bottle again, or a sippy cup.  It was early November 2010  that he last had a bottle by mouth.

He also has a tone check in the NICU follow up clinic that day.  They want to check his muscle tone.  At his last NICU follow-up clinic visit (12mo), the doctor examining him brought this up, and wanted to re-check him in a few months.  He could have a condition called "hypotonia," meaning "low muscle tone."  I think the doctor was suspicious of this because of his developmental delays, and specifically how he does not like to put much pressure on his arms.  And at the 12 month visit, he wasn't sitting up on his own, or bearing any weight on his legs either.  (Now he is sitting up on his own like I said above... And, he loves to stand up!  He smiles SO big and giggles whenever we help him stand up!)  Of course, he could not have hypotonia, and all of these issues (developmental delays, disliking pressure on arms) could just be solely from his prematurity.  He had multiple things going on with his arms back in the NICU days- several broken bones because of a lack of calcium in his diet, lots of IV's, and PICC lines... so it could just be sensory issues from all of the pain he endured.  And of course his developmental delays are from prematurity too... but we need to make sure there isn't something else going on on top of that.  Honestly, I've kind of put this part in the back of my head for now, until we have an answer.  I didn't want to spend the last 4 months worried about this.  That's usually how I've dealt with Eli's medical issues- I'm not going to worry till you tell me I have something to worry about.  There's plenty to deal with, so I'm not going to worry about what else could be wrong, till I know if it's something I do in fact have to add to the plate... It's one day at a time, one issue at a time... And we've made it this far!

Thursday he goes back to the eye doctor, and will most likely be fitted for glasses at that time.  I am actually very excited about this appointment, just because I am anxious for him to get glasses.  I really feel like it will help him continue to develop and meet more milestones.  We know that he is very nearsighted and doesn't have some of his peripheral vision because of the 2 laser eye surgeries he had in the NICU, because of the ROP (retinopothy of prematurity).  The loss of some of his peripheral vision cannot be corrected (unless they create some treatment or surgery to restore that in his lifetime...).  But the near sightedness can be corrected with glasses.  One of his eyes is also weaker than the other, and has trouble tracking as well sometimes- we are hopeful that the glasses will help strengthen his eye, too.  I used to say in high school, that I wanted a little boy that looked like the one in Jerry McGuire... Well, I think I'm about to have one :).

Clearly God has a plan for Eli's life.  No matter what answers we get on Wednesday and Thursday, God is in control and has His hand right on Eli...and me, and Chris, and Isaac...  We trust Him and know He will provide for our every need.  To God be the glory for healing that's already been done.  To God be the glory for strength while we wait on on answers and continued healing.

Psalm 66:20

Praise be to God, who has not rejected my prayer or withheld his love from me!