How’s Warren Doing?

I’ve already had one meeting this morning and Warren’s PT session… his OT session starts in about 25 minutes, so I found this little window for an update.

We headed to Duke yesterday for Warren’s CT and appointment with our neurosurgeon. The insurance issue was long and drawn out… never did get perfectly resolved… Tricare wants us to go to Womack… Womack really doesn’t want us because they won’t sedate him… blah, blah, blah. Our insurance girl worked very hard to do all that she could (Warren is sending her some chocolate-covered strawberries as a “thank you” because she does go beyond the call of duty for us). Anyway, we had it at Duke, and Warren did well. I can’t go with him for the scan, but Craig said that he was a bit wilder… chatting and legs kicking. Somehow, they got it without sedation. Not sure how long we can ride that out, but I’m super psyched that he did it yesterday.

Neurosurgeon is pleased with his progress. The CT looked pretty good, but we didn’t get the “all clear” yet without the shunt. Ugh. One of his ventricles has grown which they are watching closely. As his brain settles, we’ll know more about what his baseline will be, but… this ventricle cannot keep growing and growing. We need it to STOP. If it doesn’t, we’ll have to revisit a shunt again. Please, oh please… let my child be done with surgeries. We head back in November for our next CT to check the progress unless we notice any negative changes before that.

I will say… he’s doing this head turning to the left thing for the past several weeks. I don’t know what it is or if it’s anything. Nothing odd is happening… his eyes aren’t doing anything funny… it just makes me uneasy that this may be “something” neurological. I don’t want to ignore it just because I don’t want there to be anything to it. We’ll keep a close watch and see where we go with this. If anything worsens, it could be a sign of hydrocephalus which would need to be dealt with immediately (i.e. a shunt). Let’s just pray I’m worrying over nothing. Wouldn’t that be a welcomed change??

Otherwise, little man is doing well. Super chatty… sleeping very little (less than 8 hours a night for sure)… too many 5 AM hour wake-ups, especially on the weekend!!… just as cute as EVER! We head to Womack tomorrow for an appointment with our developmental pediatrician who was WONDERFUL when he saw her back in the spring, so I’m looking forward to picking her brain again. I hope I’m as impressed this time as I was before!

Long weekend… longer list of honey-dos for my beloved. Not sure how much “fun” will be incorporated. I will say that it has to be better than last weekend. We got new appliances in the kitchen and for lack of time will just say, EVERYTHING required some type of demolition. What a disaster, but now… it looks great! Ha! We’re still settling in. Hope you guys have a great one!

Craig, Amy, and Warren

Quick update on the battle: I think we won… finally. Insurance fought hard. Wanted us to have it done here without question. What a headache! What I love is that it’s the powers at be who have no idea the complexity of anything who make the decisions. When I actually spoke to the radiology nurse at Womack, the protocol was the same as last time: “try” it without sedation… if they couldn’t get it, they would either refer us out or have to admit Warren in order to sedate and then get the scan. Time not being on our side, I was concerned with having to potentially make two different appointments to get the scan. Regardless, he called me yesterday and said we had been deferred back to Duke. Whew! I don’t have the authorization yet, so until then I don’t count anything as done. I think we’ll be fine, though… this time, at least. Just ready to hear, “He’s doing great without a shunt and doesn’t need one”. Prayers we hear that next week! So, we are glad to be going to Duke where know it will get done. I did find it amusing when the nurse from Womack said to me that they had a “lightning fast” CT scan and would only need Warren to lie still for 20 seconds. Ha! 20 seconds?? Really? Oh, he doesn’t know our little monkey! Prayers for no sedation at Duke, either… that would be fantastic!!

So for now, we’re just having a typical week. I think he took 2 naps last week, but since the weekend we’ve been nap-free again. Of course, he only napped when I was rocking him, so it’s not like I can get anything done during that time anyway. Spoiled! He’s grabbing onto us a lot more these days when we carry him; it’s awesome. He’s really holding on. He’s beginning to use his hands a lot more to explore around him, especially reaching for us when we get close and talk to him. Since his vision is diminished, this is ever so important.

So anyway, that’s where we are. It’s another weekend with things happening every day, so it’ll probably be quick. I feel like we’re in a construction zone again, as we begin to pick up and get some projects done. We’re having the entryway painted right now, while Craig is having to do a little cabinet demolition in the kitchen in order for our new fridge to fit this weekend. I’ll just say that I’m not wasting my time cleaning the floors this week with all the dust flying around! Hope you all have a great one. Thanks for checking in, as always.

Love,

Craig, Amy, and Warren

Sitting here on my daily “will Warren keep his meds down” watch which is how I start every day. It’s my first dread every morning, but so far so good (it’s only been 10 minutes). Our weekend was short. One of those where there’s something continuously happening, so it was gone before we knew it. Here’s to another Monday… ugh. Seems so far from Friday, huh?

Warren is doing well. He’s definitely getting much stronger with much more control of himself. We truly believe that he’ll be able to sit up on his own; that is within our reach. How long? Who knows, but we think he can do it. The right side is the difficulty, as he doesn’t control it as well nor is it as strong as his left. We have hope. I would love for Warren to be able to sit up on the floor amongst his cousins and family to be “part” of the group.

I’m not in a chipper mood in case this seems kind of blah. I have to start a battle with insurance today which I am not looking forward to. Warren has a CT scheduled at Duke in 8 days followed by an appointment with our neurosurgeon to make sure his brain fluid is still at a stable point. Well, I got the denial to go to Duke in the mail over the weekend for the CT scan, and they’re sending us to Womack. Yes, we have traveled this path before. My frustration is why Womack says they’ll take Warren when they truly can’t handle him. In case you forgot from our last dilemma… Womack is scared of scans with sedation, especially with those patients who have a history of seizures. I don’t blame them, as they’re not a pediatric specialty facility. Let us go where they know what they’re doing then! As it worked last time, we’d have to make an appointment to try and get a scan without sedation first. We’d go there and try that. If that didn’t work, they’ll either send us somewhere else or have to ADMIT Warren into the hospital to get the scan with sedation. Are you kidding? I haven’t spoken to anyone for this round, but I’m assuming nothing has changed. The problem is that we don’t have that much time. Our appointment with the neurosurgeon is in 8 days, and we have MUST have a scan before then. This isn’t just a regular CT because it’s time for us to have one. This is a VERY important scan to make sure Warren’s brain is handling the “no shunt” decision. Dr. Grant at Duke was still “very concerned”, so this is not something we can figure out and work through over the next several weeks. It has to be done now. So, ugh! Days that start with battles are headaches. Maybe it will be easy? A Momma can dream, right? Duke is by far the easiest option. I’ll let you know…

So, with that dark cloud lingering overhead, I don’t have too much else to report in on. My little monkey is due for his second rounds of morning meds, so here we go again. The week ahead seems pretty typical… daily therapies with nothing too much out of the ordinary. Hope yours is great!!

Craig, Amy, and Warren

Hi guys! Hope you all had a great weekend. We did. Had our first official pool party with the family to celebrate a birthday. Yesterday, Daddy and Warren bonded while I headed out for a bridal shower and to hunt down some new kitchen appliances. Why? We closed on the house Friday! You guys are amazing. I mention it on here Wednesday… got the call Thursday that the paperwork came in… closed at lunch Friday. Hallelujah!! We are so glad to be the owners of only ONE home! Other than that, just a typical weekend for the McManus clan.

The little one is doing well. He was up BEFORE 6 both mornings this weekend which wasn’t great, but what can ya do?? This morning, of course, I woke him up at 7:45 because he had two appointments today. I can’t believe he slept that late! Stinker!! We headed out to get him fit for new AFOs (foot braces) this morning, and he did great. Then, we were home for an hour before he had OT. Two appointments is a lot mainly for his feeding schedule. Not only is he off his feeds for the time of the appointment, but we also have to to stop them for a good amount of time beforehand to decrease the odds of an unwanted incident. We’re in the middle of making up lost time right now. So much of a schedule for the Big W… so much of a headache for the Momma!

He’s doing well otherwise. He’s still his happy and chatty self. They said that if he regressed in any way that we’d need to look at the “no shunt” decision, but he is just doing so fantastic. We have another CT scan at the end of the month, but we are feeling really good about where we are right now. His mouth seems to be better for the moment. I did call and try and make him a dental appointment. I have to call back the first of September to get an appointment in October. So, you can see that we won’t get any answers from the dentist any time in the near future. Nothing can be easy.

Time to find him something yummy to eat. Hope you all have a great weekend. I don’t think there’s anything too out of the ordinary happening over here. We’ll take it!

Much love,

Craig, Amy, and Warren

Daddy’s running late from work, and Warren and I are hanging out in the kitchen while dinner cooks. There are two small steps from the kitchen down into the Rec Room where we are temporarily living, so it’s easier to just stay in the kitchen by the time I get his stroller, feeding pump and my big guy up here (a ramp will be on those steps at some point in the future… so many “to dos”)! I figured it was the perfect time to say hello to all of you.

What’s new with Warren? Honestly, not all too much which is just fine with us. He’s taken melatonin at night for probably the past four or five nights now. I’m on the fence with how well it actually works. We’ve had nights where it’s still taken him until 11:00 to get to sleep… other nights where he’s been shutting his eyes by 9:30. Granted, both of those are better than midnight. He’s still up with the sun, though. I believe Craig’s exact words this morning as he put him into our bed were, “Warren, Daddy loves you, but he would love you a little more if you would sleep for another hour.” Ha! The dosage charts with melatonin vary, so I feel confident in saying that he could have more; we’re just waiting it out for now. Still… no naps!

Unfortunately, we’re back to HIGH ALERT for throw-up. He’s really struggling in the hour after he’s given meds right now. It’s frustrating to say the least. I dread that hour all day long. He lost them just yesterday morning with his CNA while I was out for a walk, but luckily I’ve gotten smart and have a “bucket” that is now part of our decor out and ready. Yesterday, it worked like a champ. No clean up… Hallelujah! I’m sure we won’t be so fortunate every time, but I’ll take what I can get.

He’s got another ulcer in his mouth! For the love of Christmas can we stop with those already!! I spoke with our pediatrician yesterday, and there’s really not much we can do. We have more Magic Mouthwash to pick up and are rinsing it with salt water. We’re starting him on a vitamin to see if that will make any difference. His mouth is going to be the source of my insanity. Poor guy… then, we discover a scab under his ankle yesterday. Wouldn’t it be nice if he could tell him how that happened? I have deduced that maybe his AFOs (foot braces) are rubbing him the wrong way. I’m calling tomorrow to get another pair ordered, but that takes a custom fitting and 3-4 weeks “wait time” until we’ll actually have them. That’s a long time to be without… just another dilemma to figure out.

Mmmm… I think that about wraps up all things Warren for the past few days. I’m really tired of the gags, coughs, and sometimes lack of recovery of belly content, but what to do. Maybe in a year we’ll start coming off these meds. What a dream! Otherwise, we’ll remain on high alert and enjoy our chitty chatty little guy with more energy than both of us put together. Warren is going places, my friends.

By the way, we still own the old house. We’re under contract but the hoops being jumped through by the people trying to purchase it is a HUGE headache! Two mortages takes away from so many aspects, so prayers up that issues get resolved and we come to a close sooner than later!!

Hope you guys have a great weekend!

Craig, Amy, and Warren

Happy ONE MONTH seizure-free to Warren!! WOOHOO!!

Ah, the week is over. Yes! Craig has been out of town all week, so Warren and I are both super excited that Daddy should be home today by dinner. To say it has been a long week would be understated. I’m spoiled with Craig home every night so when Warren decided to throw up all his meds around 9PM last night, well… Daddy can’t get home fast enough.

Everything is going well. Warren’s CNA and I took him to Duke Tuesday for a neuro appointment. Our doc is thrilled with his progress. We’re leaving the seizure meds alone for probably close to a year, but we are all so grateful that we had a positive outcome from the hemispherectomy. The only med we may be adding is one for Warren to SLEEP! Our neurologist was definitely in favor of adding a little melatonin into our nightly routine to get Warren some more rest in the day. At 12:05AM when he was finally closing his eyes last night, I thought, “We may just give it a try.” The issue, as always, is trying to find what we need, but I did order some today. I’ll keep you posted.

Otherwise, we’re having some issues with Warren keeping down his meds, and I’m not too sure what we can do about it. Slowing them down… separating them… yada yada… we’ll see what works. Last night, nothing worked and at 9:30 I was doing laundry and mopping floors. Oh well… just hate having to regive all those meds a second time. Never know what actually stuck with him the first time, ya know? Hope we get through this phase soon.

Everything else is good. Foot is still a little tender, but his PT today went well. He remains super chatty a lot of the time and in good spirits. Something tells me his little face is going to be tender by tonight once his Daddy tries to catch up from five days of no sugar. The weekend… not sure. No big plans which works just fine for me! Hope you all have a great one.

And, by the way, peanut is Landon Christopher.

Love,

Craig, Amy, and Warren

Happy Sunday! We have pictures for you. Warning… there are quite a few, but there are a lot from our hospital stay at Duke. I also included a few pictures of where Warren spends most of his time in the new house. I always like to envision where people are in their homes. Click “Slideshow” for a bigger view, and you can adjust the timing on the bottom if they’re scrolling too fast for you (like they do for me).

Otherwise, we are doing fine. I was a bit worried yesterday because he kept jumping a bit… almost like he was startled and drawing up his legs. I had a phase where I wondered if these were the beginning of something neurological. I think Craig probably figured it out, though. His little ankle got hurt during PT last week, and we think that was just his reaction to the pain. I haven’t seen any of them today, so I’m thinking Craig was right… thankfully! If you heard the Hallelujah chorus this morning before you actually got to church, it was probably coming from our house. The little guy slept in until 8:30!! We were in disbelief and enjoying it much more than his 6:30 wake up from yesterday. It may have just been a fluke, but we loved it. I’ll update later in the week after we head to Duke for our appointment.

Hope you all had a wonderful weekend.

http://picasaweb.google.com/CAWMcManus/2010_07?authkey=Gv1sRgCN_9jvHYgdnc_QE&feat=directlink

Craig, Amy, and Warren

Cooling down after a very muggy walk this morning, so I thought I’d spend a minute with Warren’s peeps!

We are now seizure-free for almost 3 weeks (officially on Saturday, I hope). Heading to Duke next week, as I said earlier, just to check in with our neurologist. Warren continues to be great for the most part. The sleep… well, it’s still lacking a bit. We put him to bed last night at 9:30 after a day with zero naps… he chatted LOUDLY and kicked around until at least midnight (I gave up and went to sleep)… at 6:30 this morning, he was back at it! Craig and I just laughed and gave up… put the little booger in bed with us to start the day with some Warren chat. I said, “Warren, you are three years old. You have got to have more sleep, son.” And then, I believe Craig stated it better, “No, I think we’re the ones who need more sleep.” Mmmm, that may be what I really meant. Anyway, no complaints from us.

We did have a bit of a rough morning. All was quiet… Warren and I had eaten breakfast… kicked back before the day began… and BOOM! He throws up everywhere. Ugh. Meds… the fruit I gave him for breakfast… the formula… Happy Thursday to Mommy! It was out of nowhere and our first incident since coming home. So, instead of waiting for his CNA and going for a walk, I was giving a bath, scrubbing the floor and doing laundry. He was happy as a lark within seconds, though. Poor guy. Not sure what happened. I will say that when I brushed his teeth after the fact, he fussed and had some bleeding. His damn (sorry) mouth is going to give me a run for my money. I tried to see what’s wrong, but it’s so far back that I can’t tell. Who knows if that had an effect, but we know how Warren is with his mouth. Brain surgery… no big deal. A sore in his mouth… all hell breaks loose. Go figure.

Okay, time to hit the showers. Two therapies today for the little one, and then I’m off for some paperwork. I’m putting together a notebook of everything you need to know about Warren. The weekend looks like it’s a one task event: unloading the dreaded POD. Have a great one.

Craig, Amy, and Warren

This is going to be quick. Need to get dinner in (okay, just reheating a meal that someone brought over… ha) and keep playing with my new steam mop that Craig brought me home today as a surprise. He is a man who knows how to make me happy. A new cleaning tool, especially for a house full of tile floors, has made my day!! I am in love with my Dyson vacuum cleaner, and this may give it a run for its money.

Warren is doing great. We remain seizure-free which is just amazing!!! The “I don’t need a lot of sleep” phase is still with us. We’re at a week now since he took his last nap. He is up all day long! With the feeding pump, we’re able to put him to bed earlier around 9:30, but it’s still some time between 11 and midnight before he falls asleep. He’s happy in there… just chatting and kicking all around. Then, he’s up before 7 each morning ready to go. I went in this morning with the camera because some of our best smiles come with the morning’s “Hi Warren” as we enter his room; it’s so precious. We’ll get some pics to you soon. Promise. So much to do around here and again… the office is still not up and running at full capacity.

He’s eating well. We have begun feeding him first thing in the morning with some fruits which we could never get him to eat, and that is going super. We’re still figuring out the details of his feeding schedule using the pump, but it is working out really well for him. I think the food going in slower has enabled him to control it better. He’s just doing great, and we are thrilled. The excitement you can feel via my words do not do justice as to our true feelings.

We head up to Duke next week for our first appointment with our neurologist since the surgery. Honestly, I don’t think anything will come from the appointment. It’s going to be a “we’re thrilled Warren isn’t having any seizures, but we are not changing his meds for at least a year” conversation, and then we’ll drive back home. Oh well… one appointment to check off the list.

Okay, not too much else to report. This week will be busy, as the dreaded POD arrived today. Craig and I have been joking about what in the world is in that thing. Neither one of us can remember too much, but I do know that it’s full front to back. Uh, hate that we have more stuff when my house is somewhat put together. We hope to get that cleared out by the end of the weekend.

Oh, and Warren did dunk his toes in the pool this weekend. We’re not ready to take him for a swim, as we are “no risk” parents so soon after such a huge surgery. From the waist down is fine, though, and it didn’t seem to really phase him. Of course, our pool is an amazing 88 degrees right now, so there is no chill factor. Craig and I both got to enjoy some time in it this weekend… separately, unfortunately, as our lives are tag teamed with Warren. We keep saying… “one day”. Hope you guys had a great weekend and have a terrific week.

Love,

Craig, Amy, and Warren