Thursday, August 13, 2009

August turns out to be a big month!!

Well, somewhat to our surprise, August has turned into a pretty eventful month for our Luke.
We had been told that once Luke was eating well and not using his feeding tube for three months straight, they would consider removing it from his belly. We were getting really close to having reached that goal. Besides taking 8 oz bottles on a regular basis, Luke has also made a decent transition to solid food (although he's not a fan of peas or green beans...or anything that's not sweet. Not yet! I'm workin' on him!). So, we felt very comfortable getting the feeding tube taken out. When I called to schedule, they said we could come in the next week. Great! On Monday, Aug. 10th, Luke had his feeding tube removed!! So far things look good. The "wound" (insertion site on his belly) seems to be closing up nicely. We have to keep some heavy duty gauze on it for now and change the dressing often, but by the end of next week, things should be better. Pray that everything closes up on its own. In some cases, the hole doesn't close and they end up having to do surgery to stitch it closed. But right now it looks like Luke's is closing and healing on its own. Thank God!

In an earlier post, I mentioned a recent EEG that Luke had, showing that he is at a high risk for seizures. Truly appreciate all of your prayers in regards to this aspect of Luke's health. We still have seen no seizure activity and thank God for that! Andrew and I really felt like we needed to go and consult with the pediatric neurologist after hearing the news on the EEG results. Again, the Lord helped us. It is usually a long wait to see this doctor. When I spoke with him over the phone, he had told me that we could come in at the end of year. I called back to ask to be seen sooner and we got in last Tuesday, Aug. 11th. :) The neurologist was very thorough and took a lot of time to visit with us and explain the results and his opinions on things. I can't really say I left with a peaceful feeling in my heart though. Something about this aspect of Luke's care just doesn't sit right with me. For now, we are following this doctor's suggestions: that Luke be taken off his current med, Phenobarb, and switch to another anti-seizure med, Topamax. The plan is for him to stay on this med until July 2010, at which time he will have another EEG to determine if he is still at risk for seizures. Keep praying with us on this. We've been made aware of a couple of different resources....experts in this field of medicine. We hope to follow up with these and make the very best decisions for Luke. In the end, it could be that we are already doing what's best for him. We just think we need to do a little more research until we can rest easy, knowing he's getting the best care.

The last thing I'll mention is Luke's upcoming eye surgery. Again, another surprise!! Luke had his eye appointment on Aug. 3rd. This was a scheduled check up and a time to discuss a possible surgery date. The eye doc had told us three months ago that he would like to do surgery to correct the crossing in both of Luke's eyes.....sometime after he turned one (October most likely). Well, at this this last visit, Andrew and I decided to go ahead and request an earlier surgery. Some of the research we've done has shown that performing this surgery BEFORE the age of one can actually lend the best results. We just really had a desire to have this done as soon as possible for Luke. To our surprise, the doctor responded, "Ok, let's do it in a couple of weeks!" So, Luke goes in at 6:30 am on Aug. 21 for outpatient eye surgery. We are anxious to see the results of this surgery. At the very least, it is a cosmetic fix. At the very best, it will improve Luke's interaction with the world around him and improve his development. Crossing of the eyes can cause double vision, dizziness, headaches, loss of depth perception, confusion since each eye is sending a different picture to the brain..etc. Since Luke can't tell us what he suffers from, we can only guess that he might be experiencing some these things. We are hopeful that the surgery will correct these issues and help Luke in so many ways!! His motor development has been delayed as he is still working on holding his head up, sitting up without support, rolling, etc. He's accomplished all these tasks, but he shows a lot of weak muscle tone in his upper body, and so these tasks are difficult for him to really master. We continue to pray constantly for God to complete His perfect work!!

The boys are both such great babies and it's so exciting to watch them grow and develop. We have A LOT to be thankful for!! Will keep you posted on the outcome of Luke's eye surgery. Thanks for praying with us NEXT Friday, Aug. 21st!


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