OK the cough won. I finally gave in and took Liam to the doctor yesterday. It had gone on long enough and though Delsym put up a good fight it was no match for his relentless hacking. We're now on the road to recovery with Zithromycin. That stuff works wonders (and fast too). He's got to get over this, we've got a giant mouse to hang out with pretty soon.
It was off to the book fair at school next. We got some cool new books to read. Liam even bought Lane a book about panda bears. (you know, 'cause they're black & white). He is an AWESOME brother, always thinking of "his little buddy". We had to read them as soon as we got home. I would like to brag on my boy and say that he read the entire Scooby-Doo Scary Safari book to me. That was 32 pages. I was so impressed. I told him I would have to tell Mrs. Hicks and he said "can you send her an e-mail now?" He was proud of himself for that accomplishment and so was I.
Lane hung out with his daddy while we ran around in the cold, but it was soon his turn for an outing. He had his 2 year pictures taken by a very nice lady named Barrie Taylor. Susan has taken her kids there and they turned out very well so we thought we'd try. Lane is not the easiest kid to photograph but she was very sweet and understanding of his issues. She really worked with him and even let Liam get in a few. We'd planned on doing them outside but the weather didn't cooperate. We'll try again in the spring. I can't wait to see how they turn out.

NICU Follow Up Visit

We went to the NICU follow-up clinic yesterday. I just love Dr. Daily. That woman is one of the most intelligent, compassionate, informative & calming people in Vanderbilt. I love these appointments so much so that we choose to go every 6 months when we only have to go once a year. She tells us what we need to know & how to get it. It was from her that we first learned of Lane's hip displacement. Nobody else bothered to let us in on this. This go 'round we found out that we need to have his blood pressure monitored at every doctor's visit, regardless of who the doc is. The boy's BP has always had a tendency to be a little high. We discovered this back in the NICU. Yesterday it was 170. OK that is totally unacceptable! Surely that can't be right so they try again, 150! That's way too high, even for him. Before we left Dr. Daily made them take it one more time, 125. OK this is more like it, still high, but that's what we're used to with him. She wants an accurate record of his BP over a period of time. If it continues to run on the high side, and it probably will, then we may have to see a nephrologist (a kidney dr. in case I spelled it wrong). We saw one in the NICU but it was decided then it wasn't a renal issue. I guess we'll see what happens with this. I foresee medication in our future. I pray this is all that it leads to.

His weight was still a concern for the good doctor. Anyone who has picked Fatboy up lately would agree. So it's back to the dietician. Dr. Daily hopes that we could go to a normal 20 calorie formula. We've been on 26 calorie since the get go. Increased calories means decreased volume. This is what we had to have back in the day. Now we're bigger, older, and hooked back up! Maybe, just maybe, we could tolerate something that isn't quiet so elemental. I worry he might not be able to handle more volume but if it's done VERY slowly it might work. Drastic changes backfire on us everytime. I will be conceited for a moment and say that I am a Lane expert and they will have to take it one baby step at a time or it won't work. It would be nice to get away from the continuous nighttime feeds. This is where the weight gain comes from I think. You'd gain weight too if you ate for 9 hours straight. The purpose of this was to make up for the volume he supposedly can't handle during the day. We'll leave this to the dietician. After all she is the one with the degree, not me (at least not in that). All I know is something's gotta give. He's 2 and weighs 34 lbs. For now I can manage him but that could change one day. People ask me all the time how I do it. My answer is always the same. By the grace of God. He has given me the strength I need, not just physically, to walk on this path He's chosen for us. I know God won't desert me. He will provide for us just as He always has, but in His time and in His way. He's not going to let Lane live and then not give me a way to care for him here always. Of this I am certain. Naive? Denial? Nope. Faith, pure and simple. This whole journey is about nothing but faith. And hope and strength.

So for now the game plan is to monitor his blood pressure and tackle this food thing again. Why do I see myself learning to take his BP? Just another thing for Susan or Will to teach me. One step closer to that "honorary nursing degree" that I so deserve. :)

I would like to thank everyone for reading CaringBridge. This is just an easier format to use. I typed this entry on CaringBridge twice and it got sucked into cyberspace each time. For those of you that have seen my temper, you can imagine it was not pretty. Tech support pasted what was left of it here. He's so smart! He's going to put my entire CaringBridge site on this one. I hope you enjoy my ramblings on here. It's just a way to look back one day and see how far we've come. A way for me to remember. There is so much loss in forgetting.

The reason why...

I started Lane's CaringBridge site as an easy way to keep everyone informed of his last surgery. It quickly became a way to tell his story, a way for me to remember. The only problem was that the other half of my heart, Liam, was rarely mentioned. Also it only allowed you to post 12 pictures at a time. (Anyone who knows me, knows I love my pictures!) I decided the solution was to create my own blog where I could write about the crazy antics of one little boy and still tell Lane's story of the long road home. They bring so much joy to my life, each in their own way. I said on the CaringBridge site that Lane's life didn't turn out the way I'd envisioned it but this way became my journey. It is a journey of self discovery and of faith. A story of love, courage and hope. I hope you enjoy reading to see how the story unfolds. I do believe God likes to do things that make us smile...