Thou He slay me yet will I trust Him

This has been a very difficult week. Lane's seizures seem to be increasing in intensity and now he cries and cries afterward. It's hard to calm him, nothing I do seems to help. Eventually he gets over it on his own but this can take up to a hour, sometimes longer. I hate the feeling of complete helplessness that plagues me as of late. It reminds me of those few months after we came home from the NICU, when he cried for hours and nothing calmed him. That was the lonliest time I've ever known and every bit as scary as the NICU, in some ways more so because I didn't have the security of the doctors & nurses. It was just me, Lane and the Lord above. It was also during this time that it seemed as if God had stepped back and was waiting to see what I would do. Would I bow before a God that allows this to happen or would I walk away. Well obviously I didn't walk away. How could I after all I'd witnessed since Oct., after all the times God carried all of us during those days . Don't they say the stronger the faith, the surer the assails will be? Well I was pretty sure this was some kind of test, like Job was put to. Even after all the loss he suffered he never turned from God. "Thou He slay me yet will I trust Him". I was determined to pass my test then and I will pass it now, as hard as it is at times. I'm by no means saying that this faith of mine poured out of me and I never once questioned God's will. Believe me I did on more than one occasion. Believing in God's purpose doesn't change the fact that there are going to be things missing in the vision we have for our lives and when they are gone, the agony , we can be sure will be deep, I convinced myself during those endless nights that God's plan for our lives was so much greater than anything I could envision. After all "For I know the plans I have for you declares the Lord, plans to prosper you and not to harm you, plans to give you hope and a future." Jeremiah 29;11 It was up to me to decide if I was going to go around quoting things like this because it sounded good or was I going to truly BELIEVE? As the days faded into one another I chose to believe. Faith is what got us this far. Lane could've been taken from us on any given day for those 3 months but God saved him and let him come home. Yes, there was more to this story.
What does that have to do with now? The same fear and feelings of helplessness are haunting me again. We have tummy issues and seizure issues and pump issues and fluid issues. I can't tell what bothers him when he cries for me now and I can't fix it. All I can do is hold him and cry too and of course pray that God will hold Lane through this and that yet again we will all be made stronger for this trial. We have faced much worse.
You see, I've been broken. Broken enough that I can't hold onto anything but the hand of Jesus when He stretches it out. That is all I can do now, but really, isn't that enough?

Surgery # 7

I've both dreaded and anticipated this day. I know the benefits it can give him, it's the "what if's" that scare me. What if it leaks? What if I don't recognize the signs of Baclofen withdrawal soon enough? What if the pump is uncomfortable? Let alone what if he can't come off the vent in recovery? What if we can't get his pain under control? Well we decided the benefits outweighed the risks and we find ourselves in the holding room awaiting surgery # 7. After 2 hours and 20 minutes, the same 100 questions from a handful of people and a signed consent form, they came for him. Dr. Deshpande, the anesthiologist, carried him back to the O.R. That's the 1st time they've ever carried him back. Usually they wheel him back in the bed. I thought it was sweet that the head doc was the one to carry him. I told Lane what I tell him every time he goes for surgery. It's from a Carl Sandburg poem, and it just seems to fit him so perfectly. "The fireborn are at home in the fire". Lane has walked through the fires of Hell since he was born but always holding onto the hand of God. We are all stronger for this trial. I thank God every day for the faith I've gained during our journey.

After our Taco Bell/Pizza Hut routine we headed back to the 3rd floor to wait. At 2:10 Dr. Pearson was standing over us saying he was done, how easy it was and how well Lane was doing. I couldn't believe it was over that quickly. I'm used to 5 + hour surgeries. This one was only 1 hour and 20 minutes and that included the time it took to get him to sleep. We went back to recovery and he looked great. Good color, no swelling to speak of, sating in the 90's -100 with only a little blow by, pain under control and a wonderful nurse with red hair named Sarah. It wasn't long before we were in the elevator headed to the 7th floor. Our home for the night. He did well through the whole night. BP issues but when do we not have those? He was knocked out for most of the night. I never thought I'd see Lane Carter's arms as loose as they were that night. If this is result, then I'd say we did the right thing.
Fast forward to Saturday morning (and yes I've written these WAY later than they occured, the trial was June 1st and surgery was June 19). At 8:30 our nurse comes in to say she has discharge papers. That's just great except that Lane is just zonked, he responds to people messing with him but goes right back to sleep. That's not like him so we chose to hang out a little longer. By 11:30 he'd stayed awake for about 20 min. straight and given the face that his vital signs were fine we decided to leave. He basically slept for the next 2 days. I was very concerned that he'd always be like this but as they say "this too shall pass". By Monday he was more awake. I guess he finally had relief from being so tight and could finally rest.
Some people say 7 is a lucky number. Maybe surgery # 7 will prove to be just that for Lane Carter. I do think it will help him in the long run. We just have to recover first.

I'll try anything to help

I've gone back and forth so many times about whether or not to put Lane thru yet another surgery. I've had my doubts about this pump and it's potential benefits versus overdosing on Baclofen and.. well we won't go there... but here we are, sitting in Vandy's 1st floor waiting area. In a little bit we'll be given a room and Lane's Baclofen trial will officially begin.
Ok, so a little bit turned into 3 hours but we finally got a room on the 8th floor. The physical therapist came in and evaluated him and then the nurse practioner came in to give Lane his epidural injection of Baclofen. Now we wait. Again. The PT came back to re-evaluate him and his numbers (their way of rating the kids' tone) was better. This means the Baclofen was having a positive effect on his tone. Shannon even came up to see if she thought it was making a difference. She's had him since he was 3 months old and knows his tone better than anyone. She felt it was loosening him up even though he was tired and fighting her. The PT came back and evaluated him for the third and final time and his numbers continued to improve. In other words, Lane's trial was a success and he is a candidate to have the pump implanted. Now we just hang out tonight to make sure he doesn't have any adverse reactions to the medicine. What's one more night of my life in Vandy? Have some Taco Bell, talk to the nurses, suffer thru the science channel with Will, try to fit 2 of us on a couch meant for 1, why that almost qualifies as a date! I've spent many a night in this place and truly don't mind it. I do get Will all to myself on days like these. I told ya I can find the good in most anything. That is 1 thing I've learned on this journey. It's part of what got me through our time in the NICU.
I will say that Lane's arms were very loose and he seemed comfortable. Maybe it's worth doing after all. Like I said, I'll try anything to make that sweet baby's life more normal. Although he is anything but normal. He is extraordinary. Thank you God for the challenge and honor of being his mommy. I pray we make the right decisions.

I seem to have been rather remiss in my job of keeping everyone informed of what's going on with the Lanester. On Dec. 15 we went to see Dr. Sharpe (he's our neuromuscular neurologist). He concurred with Dr. Fenichel about the Phenobarb so we'll try it. He also agreed that Lane did not need blood levels checked like Sparky did when she was on it. I was just checking. Dr. Fenichel is not what he used to be in my opinion. We are to see a neurosurgeon in Jan. to discuss the possibility of a pump for Lane that would help with his muscle tone. He assured me that Phenobarb & Sinemet could be taken at the same time as there was some conflicting stories about this from 2 different pharmacies. Our bodies, at least those of us with semi normal tone, make what is in Sinemet and if you couldn't mix the two then no one would be able to take Phenobarb. This explanation makes a lot of sense. We go back in Feb. One thing that always impresses me with Dr. Sharpe is that he always takes the time to shake Lane's hand. There is something very sweet about this simple act.
Wednesday the 17th took us to Dr. Morgan. He was again very happy with his progress. Said the dialation went very easily and that we only have to do it twice a week now. He changed out his Mic-Key to the size he wanted. This one fits tighter. We go back in March. While there, we saw Elizabeth, who was our social worker in the NICU and Dr. Beth who was with him in the very beginning. She was happy to see how well he was doing. She played a tremendous role in Lane's story, always there for the sorrow and the joy. She's the one who called to tell us that he had perfed and was going for emergency surgery. I can hear every word of that conversation to this day. She took as much care of me during those 3 months as she did Lane, just like Sarah. She never had the doctor attitude. She loved Lane and it showed. She's the one who started calling him "the Lanester". I remember one day the team rounded on him and it was very crowded in our room. I was sitting in my chair and she came over and sat down in the chair with me. She nearly hugged me to death when I told her he finally opened his eye. She was very genuine in both her concern for our baby's life and her joy over any progress he made. I left the NICU honored to have known her. It was Dr. Beth who put my fears that we wouldn't be watched as closely when we moved over to Pod A to rest. This is the step down unit from what they call the "high side" She had rotated off our team by the time Lane finally got over there but she heard they'd moved him and came to see him. She was patting his butt and it caused his heart rate to increase. We had 2 nurses and a doctor that wasn't ours in there in a heartbeat. They were relieved to see what had caused the elevation and I was relieved to see that we would definitely be watched as closely in our new home as we were in the high side. She was there for us when we realized we wouldn't be home for Christmas. I remember her staying behind after the rest of the team had left that day just to hug me and talk with me. It was Dec. 15 of 2006. Funny how stuff like this lingers in one's mind. For me this is just as much a part of our story as any of the major (good or bad) events that occured. They say God is in the details. Well I have 3 months worth of details. I could go on forever but the hour grows late. I will save them for another time. As for this time she reassured me about this pump that we may wind up with. Saying that she had seen kids have success with these but that if we wanted to wait she felt the dr would be okay with that too. All in all these visits went well. A fact of which I am very thankful.

Let it snow, let it snow

Yay! No school! I'm just as excited as Liam about this. It started sleeting while I was in the pick-up line this afternoon but I didn't expect all this. After having to drag Lane in & out and negotiate an unexpectedly slippery deck I'm glad for the day off tomorrow. Liam and I went out to look at our Christmas lights while it was snowing and then he & Will had a small skirmish that involved some snowballs, not really sure who won that one. I do know that the snow and the Christmas lights were beautiful. Now if it'll just do this on Christmas Eve...

We had to take Lane to see Dr. Fenichel this morning. He had 4 seizures Monday and 2 Tuesday. I assumed he was either getting sick or his weight had caught up with his Keppra dose. I called assuming they'd simply increase his dose over the phone as usual but they wanted to see him. I took him to Dr. Myers yesterday to rule out any infection because this can lower your Keppra threshhold and cause breakthrough seizures. Nothing found. So we went to Vandy still thinking it was a weight thing and they'd bump up the Keppra a little, I was wrong. Dr. Fenichel put him on Phenobarbitol. He was on this in the NICU briefly. It can cause irritability which is the LAST thing I need. It can also have a sedative effect. I don't want this either. Dr. Fenichel did say that if it causes him to be the least bit irritable to chunk it. If it helps, great, if not we'll just stick with what we've got. I wasn't thrilled with adding another med, this makes 5 he takes, but it could be worse. I don't want him to keep seizing, each one has the potential to cause more damage. I'm going to ask Dr. Sharpe his opinion on Monday. Phenobarb has been around forever. It may be effective, but I absolutley cannot have an unhappy Lane, seen too much of that in the past and I won't go back to those days.

Tomorrow I'll give him his 1st dose and see how he does, enjoy the 1st snow day of the year, and hope that enough of this ice is gone by this evening for us to go shopping. It's 14 days & counting till Christmas and I have 2 little boys and o little presents. Not a good combination. For now, I'm going to watch it snow and settle down for a long winter's nap.

Hollywood here I come

Ok, so maybe it was Disney's Hollywood Studios but we still had fun. The day began with Lights, Motors, Action! A show that lets you see how vehicle stunts are done for movies. It was pretty cool. A guy catches on fire at the end. You can imagine Will liked that. We saw the Power Rangers on our way out. Liam isn't into them but my 1st Lane was and I thought of him. Liam couldn't wait to ride Star Tours. This is a Star Wars flight simulator. The seats don't move but you could've fooled me. It was fun in a sickening way. Will told me to look at something still if it was too much. It worked. Liam was ready to go again as soon as it was over. I think he thinks he's a Jedi in training. Will had to see the Muppet Vision 3-D movie. It was cute. We did the Studio Backlot Tour. It was kind of boring I thought. Except for the part where water comes crashing down on the train you're riding in. That'll get your attention. Liam loved Playhouse Disney--Live on Stage! I did too. We saw Little Einsteins, the Mickey Mouse Clubhouse characters, Handy Manny and My Friends Tigger & Pooh. Liam's face was priceless each time a new set of characters came out. We waited safely on the ground while Will dropped 13 stories on the aptly named Tower of Terror. He assured me the life insurance policy was good. I called to check. They went on The Great Movie Ride while I stayed outside and people watched and listened to Christmas music. We left to go eat at The Coral Reef which is in Epcot. It wasn't all that. Bonefish Grill is much better. Our waiter was thrilled we were there (insert sarcasm here). We did walk right on to Nemo though. We rode in a giant clamshell. We saw real dolphins, jellyfish and stingrays in the aquarium. I loved this part. The night ended with another fireworks and laser show called Illuminations. Thursday of course was Thanksgiving. We started the day by going back to Hollywood Studios for the sole reason of riding Toy Story Midway Mania. It was the best ride down there. We were lucky enough to ride twice. My score was less than desirable, even Liam beat me, but hey I had an awesome time. Just the walk into the ride is cool, larger than life toys everywhere, complete with a huge talking Mr. Potato Head. The ride or rather the carnival games you play are in 3-D. When you pop the 'balloons' with the 'darts' you can feel the air. On the way in a lady's sweater got stuck on the zipper of Will's backpack. He was oblivious to this and kept walking with both me and her telling him to stop. Luckily she was able to free herself and we went our separate ways. This other lady with her said "I told her not to wear that." It was funny. We wound up taking their picture for them in front of Mr. Potato Head. After two attempts to let Will ride Aerosmith's Rock 'n' Roller Coaster we gave up. Even with the coveted fastpasses it was still almost a 2 hour wait, that's just too long to stand around even if you are being serenaded by Steven Tyler. I was a huge Aerosmith fan back in the day and was looking forward to people watching and listening to them while Will lived dangerously. It goes upside down in the dark. In the words of Will, "I'm out!" Liam wasn't having any part of that one either. Maybe next time. We weren't at home but we didn't let that stop us from celebrating Thanksgiving. We had lunch at the Wilderness Lodge with 2 other Franklin Firefighters and their families, turkey, dressing and all. It was so much fun that 2 hours had passed before anyone realized what time it was. I missed Lane but otherwise it was one of the best Thanksgivings I've had. It was off to Epcot's World Showcase next. We wandered thru France, Morocco, Japan, the U.S., and Italy. This was as far as we got because I got distracted by Italian jewelry and perfume. We didn't have enough time to ride Soarin' or Test Track both of which I was sort of willing to do. It was all too soon time to head back to Hollywood for Fantasmic! This may have even beat the fireworks over Cinderella's castle. It was very cool. As the night drew to a close we tried not to think about leaving the next day.

Well it was inevitable. Friday came and we only had a few hours left in this magical place. The only consolation was that I knew my precious Lane Carter would soon be back in my arms. Liam was determined to conquer his fear of DINOSAUR, so back to Animal Kingdom we went. We were there early enough to see Minnie, Goofy & Mickey open the park. They headed of to Dinoland while I tried to find Lane a shirt. Will said Liam got right up to the car and said he couldn't do it. They found me in front of Primeval Whirl which is an outdoor roller coaster and Liam decided he could handle that since none of it was in the dark. I'm suprised, most everything else there is. It rated 'awesome' on the aforementioned Liam fun-0-meter. I must warn anyone that might go to Disney in the future and want to ride this that it can cause your child to shrink. Yes, shrink. Liam rode, loved it, went to ride again and was told he wasn't tall enough. Apparently you come off shorter than you go on. Just a friendly warning. I was so mad. We let it go and went on our way. By this time the kid had changed his mind again and was ready for his Jurassic journey. He rode this time, got off and said he "took a nap". In other words, he hid his face on Will's lap but he was ready to go again. This time he said he looked until the end which is where the T-Rex is. Well in the end my brave boy rode that horrible thing 4 times. The final verdict: "It was AWESOME!" He was so proud of himself and so was I. To be 6 and keep doing something you're afraid of when you don't have to, just to prove to yourself you can is pretty cool. Of course this is a pretty cool kid we're talking about. Will got to visit the Yeti on Expedition Everest again. We watched as he rode. I am very proud to be married to someone so brave. I hope he's proud to be married to the world's biggest wimp when it comes to rides. Fast cars and a straight stretch of road... now that's a different story. Up until now Liam refused to ride, not because of the drops and sharp banks but because of he was afraid of the Yeti jumping out. First of all, the Yeti does not jump out at you and 2nd of all he'd just got off the dino ride from hell. Will rode twice and by then Liam wanted to. I said we'd pass up eating, forget the souvenirs, whatever it took to get my daredevil in training to ride. This is a big coaster and I really wanted him to try it. I wasn't about to but I want him to have his daddy's sense of adventure and fearlessness. Well it turns out the wait was 45 minutes and that was cutting it too close to make it back to the hotel to leave for the airport. I was SO disappointed. There's always next time. We ate at The Restauranta-saurus and then sadly made our way back to the hotel. We caught the bus to the airport and the next thing you know where waiting to board the plane. All too soon the pilot announced "Welcome to Nashville". How depressing. It was 70 degrees and sunny when we left Orlando. It was cold and dark by the time we landed. Oh well, I'd soon see my beautiful baby. Pops & LeLe kept Lane while were gone and they picked us up at the airport. I was so happy to see him. As soon as we got home Liam trashed the house and Lane screamed through his bath. The only thing missing was the dogs. They were gone for one more night. Back to reality. It was a truly magical experience. Thank you Will for giving us the chance to put all the attention back on Liam. He so deserved it. I know he will never forget one moment of it. So long for now Disney, you can bet we'll be back one day.

When you wish upon a star...

Can I say Disney is AWESOME? We had a great time and can't wait to go back one day. We left Nashville Monday morning at 6:45 and a little over 2 hours later we were in Orlando. It was Liam's 1st time to fly and he loved it! We gave him the window seat and just watched as he took it all in. Like me, he loved the take-off. I told him it was the ultimate form of drag racing and though he may not know what that is yet, you can bet one day he will, if there's any of his Pa and me in him. We went to Animal Kingdom and he headed straight for DINOSAUR. This is the one ride he's had his heart set on since he found out it existed. He couldn't wait to get on. When he got off his attitude had changed a little. "That's NOT what I expected!" he said. He hid his face through most of it but didn't cry. I wouldn't dare ride that (or much of anything else). I was proud of him for getting on. It's more than I did. Will rode Expedition Everest while we took a nice calm ride on TriceraTop Spin. I can handle rides like these. Next was my turn. We went on Kilimanjaro Safaris. This is where you ride through an African savanna and see real animals. I got to see my giraffe and elephant. Then it was off to the jungle. The Maharajah Jungle Trek took us through the ruins of an ancient palace where we saw a beautiful tiger, birds, & giant bats. Mercifully I was spared seeing the Komodo Dragon. Of course Liam runs up, looks at it and declares "that's not scary." Maybe not for you brother, but Ellen doesn't do lizards and that's a BIG lizard. Of course our future paleontologist had to stop at The Boneyard for a little exploring. He couldn't pass up the chance to dig up some Mammoth bones. It was off to Tusker House Restaurant for supper with an African touch. It was different but pretty good. I wanted to see the Lion King show but it was too late, the last performance had already started. I was aggravated about this but then I spotted Mickey! Finally! Liam got to hug him and we had our picture taken with him.

It was cute. I will admit that up until this point I was starting to wonder why we came. It seemed like Animal Kingdom was nothing more than the Nashville Zoo meets Opryland. Where was the Disney? Where was the magic? I was about to find out...

Tuesday we went to Magic Kingdom. There IS something magical about walking down Main Street, U.S.A. and standing in front of Cinderella's castle. I stood in awe of it till Will drug me off to eat. This wasn't too difficult considering we were going to be seeing Pooh & friends. I, uh I mean Liam, got to hug all of them and have pictures taken. This was a great start to an awesome day. We flew over Agrabah on a magic carpet with Aladdin, one of Will's favorite Disney movies. Sailed with Captain Jack on Pirates of the Caribbean, this was fun even if you do go down a hill in the dark. We escaped the pirates and went on a jungle cruise. It was a fun safari boat ride until we went thru the temple with the Cobras. I know they're not real but they want you to think they are. Of course it was dark in there. To be the most magical place on Earth it sure has a lot of very dark rides. That took some getting used to for me & Liam. We found ourselves in Frontierland next. Liam & Will rode Splash Mountain. I watched. Liam loved it and wanted to go again. The thought of plunging 5 stories into Brer Rabbit's Laughin' Place didn't seem that funny to me, but I wanted to leave Disney (alive) and be able to say I rode something slightly daring. That was 'awesome' on the Liam fun-ometer, so I gave in. I felt sick in the line and searched for a way out but there wasn't one. I rode and survived and you know what, I might even do it again one day. Liam braved Big Thunder Mountain Railroad and loved it except for the dark cave with the bats. He loves the rides but hates the dark and whatever might be lurking in it. I have a problem with both. We floated on a raft over to Tom Sawyer Island. This was cool until we were forced to go thru a cave, again in the dark, and then somehow got separated. I was ready to get off that island. We took our chances in The Haunted Mansion. Will & I liked it but Liam was scared. It's funny what is scary to one is fun to the other. I couldn't wait to ride this but I was not about to ride any roller coaster. Liam was afraid in the line but was ready for the next "wild ride". Fantasyland was definitely more for me. We all rode most everything there. Peter Pan's Flight was fun. We rode that twice. It's cool to see the cars moving when you're flying over London. I was kissed on Cinderella's Carrousel by my little Prince Charming. Of course we had to do the classic Disney rides: "it's a small world", Dumbo and my favorite, the tea cups. Liam and I thought they rocked. None of us had ever seen a 3-D movie so it was off to Mickey's PhilharMagic. It was a very sensory experience You could smell the pie & feel the wind and the water. It was alot of fun. We took our chances with the witch in Snow White's Scary Adventures and made a trip to the Hundred-Acre wood for Pooh. What's not to love about riding in a giant honey pot to see a bear of very little brain. I love Pooh. The day was far from over as we made our way to Mickey's Toontown Fair. We went in Minnie's house, Mickey's house and Donald's boat. These were adorable! We rode the train around the park for a break. Liam enjoyed this. I'm happy to know that despite all this Transformer mess, he still loves trains. After a little more down time we were ready for an adventure on Buzz Lightyear's Space Ranger Spin. The night ended with a fireworks show, a visit from TinkerBell and a stroll through the castle. I'd waited 34 years to do that. Thank you Will. Dreams do come true...