Thursday, March 26, 2009

Long-awaited update

Happy spring to all,

We've had a variety of appointments for our little Jelly Bean in recent weeks. I wanted to wait until yesterday's appointment was over before I added to the blog. Essentially, Liam is facing three surgeries this year and a possible surgery next year. All of these surgeries are minor. At this point, we're attempting to consolidate as many surgeries as we can to limit his exposure to anesthesia.

Liam is going to have tubes put in his ears to alleviate his hearing concerns. It is unclear right now if that accounts for his speech delays or if there is more going on. The ENT does believe that putting the tubes in should help accelerate his speech, though. Liam has had chronic fluid in his ears since birth, making it difficult for him to hear others make certain sounds. He doesn't get ear infections, thank goodness, but the fluid is a problem, and it is clearly not going away on its own. Additionally, he needs surgery to correct the position of his right eye, which looks inward. Patching did not resolve the issue, so now we're off to surgery. The ophthamologist doesn't believe he has poor vision, which is good news--he just needs surgery to correct the muscle that holds his right eye in place. Finally, the poor little guy had so much going on at birth and during his first year that he has never been circumcised. We are now in the process of setting a surgery date. We have one more doc to see in early April and then Lisa will start the process of coordinating her schedule with the OR schedule as well as the schedules of the three surgeons. We really need you to pray for us as we go through this process--it can be really frustrating to deal with egos of three surgeons at the same time!

The other surgery that we know is on the horizon, but realized yesterday it won't likely happen until next year, is an operation to close Liam's feeding tube hole. He does still have the tube, and we were hoping we would be cleared yesterday to go tube-free, but a swallow study yesterday showed that Liam is still aspirating on thin liquids. Until he is no longer aspirating, we don't want to remove that tube. We aren't using it much any more, but it's helpful to have it in place after surgeries and procedures, and we don't think anyone will green light us on removing it and closing the hole until he is aspiration-free. His next swallow study will be right around the time he turns two in August of this year.

Liam continues to struggle with learning to crawl. He is so close, and we keep expecting to walk into a room and see him crawling, but so far, it hasn't happened. He is able to turn himself all around, and he can be quite mobile in a very strange way, but still isn't crawling.

He continues to be the happiest and most easy-going little one ever born. He laughs a lot at his four year-old sister these days, and Sarah certainly loves the audience. We're enjoying getting outside more now that it is warming up, and will play in the dirt again this summer in our garden out back.

Lisa's new job continues to go well and she still loves the short minute drive to work. She took some time away from all things medical, including the blog, this winter to focus more time on family. It was a much-needed respite, and something for which we're sure you can all appreciate the need.

In Christ,
Bill & Lisa

2 comments:

Anonymous said...

Bethany and Liam can co-author a book some day: "Creative Mobility." I've read many times that the ability to crawl is not as important as the fact that a child is mobile-however he or she decides to get around. That is why crawling is not listed as a developmental milestone on pediatricians' charts.

That being said, Bethany can crawl now that she's almost 4. We are very proud.

We'll continue to pray for Liam-and for the surgeons who will help him.

Alison said...

I am so happy to hear that Liam's surgeries are minor ones. That being said, anytime someone touches your child is major to a mom, right? We will continue to pray for little "Jellybean" and his loving family. God bless! Ali