How’s Warren Doing?

Well, a quick update while my sick baby is asleep. Warren is better. Last night was the first night he didn’t try and throw up his night meds, so I think he’s almost at 100%. He has taken naps the past few days which is not my typical Warren, but overall he seems to be doing well. My sweet Landon, on the other hand, isn’t. He’s been running a fever since Tuesday. His nose is a faucet, little cough, no appetite… sigh. Took him to the doc this morning who said we should be peaking. I hope so. He’s had enough (and I’ve had enough of the whining… whoa!). Biggest issue with the little man is his refusal to take meds. Hates them! Definitely won’t take them straight up regardless of flavor (we have them all)… I try and hide it in his milk bottle which he’ll take about 50/50… even then, he’s not as hungry so he never finishes it leaving me wondering how much he even got… tried it in straight water… tried it in juice… mixed it with yogurt. It’s the worst part of him being sick for sure!! Anyone have any brilliant tricks? Regardless, you can probably come to the conclusion yourself that Craig and I did NOT get our date night out! Maybe next week!

There is a new development with Warren’s school. Three days ago, while Craig and I were in the den with the boys… one was gagging trying to throw up and the other couldn’t breathe because his nose is such a nightmare… Craig said to me that he’d had enough of the schooling. No one can say for sure that it is the definite cause for all of this sickness, but it sure does make sense. It’s the only thing that’s new, and someone has been sick for the past 3 months. Our kids are miserable. So, I made the executive decision yesterday to discontinue services. Warren’s teacher came over for her visit, and I spoke with her about it. She supported me seeing how the sickness is only causing a lot of cancellations in combination with the fact that 30 plus therapies a month isn’t going to change Warren’s life in 5 years. It’s not. Our private therapies are in place with my main purpose honestly to prevent surgeries in the futures because of his muscle tone, and that’s enough. I wrote an email to discontinue services yesterday and am waiting to hear back. Our load just got a lot lighter, and I’m hoping the sicknesses will take a hike! Everyone with the school system was really wonderful, but again… it’s really not going to change Warren’s life. So, that’s that. The teacher did tell me that they had to turn in their recommendations for next year and for him, it was the “Severe/Profound” classroom. It sounds like common sense… yes. But, being a former teacher, every classroom has a label and if there was a hierarchy… that label is on the bottom. Hurt my heart, but I already knew that. My poor guy… he’s happy, though, right here at home, so sending him off to school every day is a decision to make for August.

And on that note, I’m off to enjoy a few minutes of naptime before the whining starts again. Patience, Amy… patience. Hope you all have a great weekend! I’m just glad I’ll have some backup! Thanks for checking in!

Craig, Amy, and Warren

Hope your Monday is starting off well and that your weekend was great! We had a good one, I must say. Saturday, Craig and I tag-teamed the day which is pretty typical unfortunately. I went to the commissary in the morning, and then he headed out for a haircut and our nephew’s basketball game in the afternoon. I guess we can look at it like this: we both had some one-on-one time with our boys, right? Sunday, we had a birthday party for the boys’ cousin who turns one tomorow! He is 10 weeks younger than Landon, so it’s a lot of fun when they get together. Warren went, too, once we finally found a chair to put him in for the couch. We have this brown chair that we used to use all the time. It was perfect for yesterday to not take up so much room as the stroller would. We couldn’t find it anywhere. It took Craig multiple trips to finally locate it, but about 45 minutes before we had to leave… he did! So, the boys went along and both had a good time. Craig left early with Warren to get home instead of dragging out the feeding pump and meds that were needed. Fortunately, we have a family that “gets it”, but no worries… Landon and I stayed to party! Ha! That was, of course, until he did a face plant onto the floor in combination of realizing that it was his naptime which led to a meltdown. Then, it was time for us to go, too!! The Giants won last night and are headed to the Superbowl, so we all know that Craig is on Cloud 9. Looks like a Superbowl Party is in our future! And that, was pretty much our weekend. No complaints!

This week is completely normal. Therapy today and tomorrow that we travel to. Wednesday is free until someone calls to schedule an appointment. Thursday, he has 2 therapies and then Friday we’re off again (yes, until someone calls). I go through phases where the “to do” list for Warren is extensive, and I’m in the midst of that right now. Several of our referrals expired which takes phone calls… we are going for a second opinion with a GI and insurance only gave us 3 months to get it, however, the first available appt is in May–4 calls to get that to happen… Warren’s stroller broke this weekend and we can’t recline it which is an issue (how long will that take to fix… ugh)–already made 3 calls this morning and ended up leaving a message… made 2 doctor appointments for the upcoming months, as we are behind on seeing several of our specialists-more calls…he needs a new G-tube (the port in his belly)- phone call…see a pattern? Ha! I have spent a lot of time on the phone this past week with more calls ahead (never heard about that last contractor for the bathroom, so I need to CALL about that today). I really don’t like to talk on the phone either! Too bad! Hoping the lull of “to dos” comes soon. Thus far, I’m keeping it all straight, though!

Not too much to report in on really. Warren is doing well. Healthy. Stable. We’ll take it! Landon has another runny nose… gee whiz… so there’s a lot of Boogie Wipes around here again. Poor guy can’t catch a break, but he’s doing his best! It’s quite a typical week which is fine! I think that Craig and I are going to get out one night this week which will be nice. Always nice to have a date (little did we know before kids that every night was date night!). Hope your week is as wonderful as you are! Thanks for checking in and glad you enjoyed the pictures!

Craig, Amy, and Warren

Hope you enjoy the pics!! Click “Slideshow” for a bigger view.

https://picasaweb.google.com/craig.e.mcmanus/2011_12?authuser=0&authkey=Gv1sRgCMaD0oWnmK_0Kg&feat=directlink

It’s our first 5-day work week since the holidays, so you’ll understand when I say, “It’s only Tuesday?” Ha! We’re not used to the usual schedule anymore. Back to the grind, right? We had a great weekend with the boys. Sunday was my niece’s birthday party at a jumpy room (you know an entire room filled with those blow up bounce houses, slides, etc), and I was super excited to take the boys.  For one, Warren doesn’t have to be strapped down in his chair the entire time. Craig took him down the slide for the first time, and he was able to lie in one of the bouncy beds until his brother started attacking him and wouldn’t leave him alone. Although Warren still doesn’t show when he likes something, it was nice to be able to let him doing something different. You never know, right? I thought maybe the slide will make him laugh?? We haven’t heard him laugh in almost 4 years now. He didn’t laugh or even smile, but at least we were able to give it a shot!

Now, speaking of laugh… when you have a child who had the best laugh and then you lose that laugh, you appreciate your other’s child’s laugh ten-fold! Oh my! My Landon had a blast! The squeals and pure belly laughs from playing with that baby were absolutely priceless. The best part may have been the long nap he took when we got home, but regardless… I’m not sure who had more fun. Me or Landon? It was a great day for sure!

Otherwise, the boys still aren’t 100%, but we’re getting there! Nothing much to speak of at this point, though. Landon has a teeny bit of a runny nose, and Warren coughs from time to time. Really nothing much. I don’t think it had anything to do with that, but two nights ago Warren decided not to sleep! Whew! He woke up at 2:55, and I don’t think he went back to sleep. With his monitor, every time he moves or makes a noise it comes on with the bright screen and loud sound. It came on constantly. It was a long night to say the least. Not sure why he did that, but it made for a sleepy boy come afternoon yesterday. He fell asleep on the way to OT… he fell asleep on the way home from OT… and he finally was able to take a nap once Landon went down around 3:30. I had to wake him up after 45 minutes because he needed to get on the feeding pump. Poor guy! Let’s just say… he slept GREAT last night, and I woke him up this morning at 7:15!

What else? No word yet on the third contractor for the bathroom. I’m giving it this week since we’re just now through the holidays before I call to find out what’s happening. We’ve been approved for the work, so let’s go! The faster we get started, the faster it’s finished. With the new bathroom some time in the future, I’ve begun the search for a new roll-in bathchair for Warren. It’s been awhile since I had to get Warren a new piece of equipment, and I’m dreading it. What will this wait be? Remember, we waited almost a year to get his stroller! It’s so ridiculous! So, our OT is supposed to speak with a vendor to get us some models to put Warren in to view… then for the Rx from the doc… then for the Letter of Medical Necessity… then for the submission to our primary insurance… WAIT… then for submission to our secondary insurance… WAIT WAIT WAIT… who knows how long it will be?? It’ll be sad when we have a great roll-in shower for Warren and no chair to use for 6 months! Ahhh… love “the system”. We can use the one he has now, but it kind of defeats the purpose of saving our backs. It’s low to the ground which is a big part of the issue. I’m not worrying about it, though. We’ll get it!

Therapies are back to the norm except for no PT this week. He’ll make up for that, however, with 2 tomorrow and 2 more Thursday. At least they’re all at home. Yay! Last week, there were two therapists here together, and I was intrigued by a conversation that I guess they thought I couldn’t hear. They were talking “through their teeth” to keep it on the down low, I’m assuming. However, I was 10 feet away and could hear it all. It wasn’t to hide anything from me; it was to try and not hurt my feelings. They were commenting on how one goal of Warren’s is  for him to be able to use sign language for the word “more” and how they don’t think that’s a feasible goal. One was recommending that maybe they change that goal to hitting a switch instead (that’s a big, round button which helps teach kiddos cause and effect),  but then the other said that she had never seen him purposely hit a switch either, though. It was an undercover conversation basically saying what are his goals supposed
to be when he doesn’t really do anything with a purpose? Ahhhh… as Craig and I say, “He is who he is.” It’s an honest evaluation and didn’t hurt my feelings at all. I appreciate the sensitivity, but it only makes me question more all of  these therapies for him. Remember when they all started and I swore I was going to make some changes. Ha! Haven’t made a single one!! I guess we’ve just embraced the schedule!

Speaking of… little one is finally down for a nap, so it’s time for me to go through his old clothes, sort and put into containers before getting the Asian Pepper Steak on for dinner. Yum! Always busy busy! Hope the rest of your week is fantastic!!

Thanks for checking in!

Craig, Amy, and Warren

Whoa! That’s the first time I’ve typed “12″ for the year. I’m sure you’ll see some “11″s until I get about halfway through the year! On that note, Happy New Year!!

Craig and I rang in the new year in Raleigh this year. It’s the first time we’ve not been at home for New Year’s Eve in 5 years. It was a treat! We had a great time and for those familiar with Raleigh… the acorn was literally right outside our hotel window. Literally. Although I wanted to go to bed at 10 (no surprise), we didn’t have a choice with the thousands of people outside our window and the fireworks that we knew were coming. It was great, though.

We have had a great couple of weeks with Daddy home. So nice for me! We were quite productive but did so at a relaxing pace! Today is Craig’s first day back at work and unfortunately, he didn’t have a good night. Believe it or not, I think the boys are getting sick again. Ugh. We have some runny noses and little coughs. Warren woke up at 4AM coughing, so we both jumped up every time. He finally got back to sleep around 4:45 and 5 MINUTES later… we hear “BEEP!” We pause in disbelief and hear “BEEP!” Yep, it’s a smoke detector somewhere in the house at 4:50AM. So, we do what you’ve all done before. Walk 20 feet… pause and listen. Find which direction it’s coming from… walk 20 feet that way… pause and listen. LOL! What a night! We tossed and turned for the rest of the night, so I’m hoping Craig makes it through the day. He’s been a bit spoiled with later mornings than usual and naps every day!! I won’t be surprised if he walks in the door and collapses tonight!

Ah, as I said, though, it’s been a great couple of weeks. I’m hoping this bug isn’t anything too much because I’m sick of being sick. No one really was at a full 100% yet anyway. This weather probably isn’t helping with 30s to 60s in a matter of days. I will say, though, I was able to put my Christmas present to use! Craig got me a remote engine starter for Christmas, so I can crank the van from inside the house. Nice! He told me a couple of weeks ago that there was a recall on my van, and he had to take it to the shop. Sneaky devil! He also knows that I really wouldn’t pay attention to anything vehicle-related (his “domain), so he could get away with that. It’s awesome!!

Let’s see… what else? Warren’s nurse cut her finger last night and has 5 stitches, poor gal! I’m trying to get her to chill out a bit and let it heal! It’s changing my schedule a bit running back and forth, but she’s one that doesn’t want to sit. I just gave Warren a bath and she was determined to help in some way. I finally had to say, “Go sit down!!” Anyway, therapies start back up tomorrow, so it’s back to the grind. It has been super duper nice having some time off from those, especially the ones we travel to. It changes the entire course of the day when Warren has an outing! I have a sticky note to get some pictures up here for you! We talked about it several times over the break, but obviously it still didn’t happen. I should really figure out how to do it myself, huh? Having a computer guy as a husband makes you VERY technologically dependent!

I should probably go for Landon’s safety! He decided yesterday afternoon that he was done with crawling. He’s been walking quite a bit for several weeks now, but he figured out yesterday that he can always walk. Uh-oh!! He has his first big bruise on his face where he did a face plant into a toy yesterday. He’s a man on the move! Unfortunately, we have a strip of hardwood in our den in front of the fireplace that makes a slight ledge between the floor and the carpet. That is a recipe for disaster when you’re 13 months with little balance! It’s fun, though, as he gets soooo excited as he makes his way around. Super cute!

Pictures soon… promise (I always promise, though, huh?). Hopefully, the boys won’t get any worse and we can enjoy what looks to be a beautiful weekend! My niece’s birthday party is this weekend at a jumpy room. I can’t wait to see how much fun Landon can have there!! Hope you all enjoy the rest of your week.

Craig, Amy, and Warren

Hope your Christmas was extra Merry this year!! Ours was wonderful. Craig has already been home for a week, and time is passing too quickly! One more week to go before he’s back to work again. I tell ya… I know a lot of women who want their husbands to go to work, but I’m not one of them! I just love having him around all day, and we’ve gotten so much done! Come on lottery! We want Daddy here with us!

Our Christmas Eve was wonderful with just me and Craig. My “big” gift was a remote ignition starter for my van! No more cold mornings in the van before the heat kicks in! I can start it from the house now. Woohoo! I didn’t see that coming at all! I got Craig and night away for New Year’s. I made arrangements with another couple and we’ll be heading to Raleigh Saturday for the night. We haven’t had a New Year’s out of the house since Warren was born, so I think he was pretty surprised! The boys had a nice Christmas morning with everyone sleeping until close to 7. Pictures to come soon. I wish I could post a video now, as our little Landon is becoming quite the parrot repeating everything in his own special way. It’s so thrilling! He said “Tanta” for Santa and when asked what Santa says, he made his mouth into the perfect little “O” and said, “Ho Ho Ho”. He’s brilliant! LOL! Yes, that’s what we think, and we tell him that every day. It’s really fun around here these days!

The family came over for lunch and the chaos began. Ha! Five kids ages 6 and under makes for a lot of presents… huge messes… lots of excitement… a few food stains on the carpet… and a great day. The babies (my nephew is 10 weeks younger than Landon) were both exhausted, so it wasn’t the perfect time for my little guy. By the time presents came around, he was DONE. He wasn’t interested in any of it, so Craig spent the time trying to chase him around while I tore through the gifts. I know when the time comes and the kids are all old enough to open their gifts calmly that I’ll miss the craziness! The boys were spoiled with toys galore and clothes to go around for months!

My most exciting moment wasn’t even on Christmas, though. Craig has been working on a cabinet for my kitchen for almost a year now, and yesterday… he put it in! It’s amazing! So now, I’m moving everything around… from this closet to that… shelf to shelf… redoing it ten times over. Fun! For those who really know me, I am like a kid in a candy store. I just love doing it! I have 20 minutes before Warren needs to go to therapy, and Landon is napping. So, I have 20 minutes to do some arranging. This is our only therapy this week, but his PT is off for the next 3 weeks so I thought we should go.

Hope your Christmas was just lovely and filled with those around you that you hold near and dear to your heart. That’s the focus of our day around here, and everyone who was tearing up paper in my Rec Room and having a blast means the world to me! That is the holidays.

Love to you for a blessed New Year,

Craig, Amy, and Warren

Well, we are on Day 12 of when the first one (Warren) started getting sick, and I think I can say that we’re all on the mend finally (or at least 3 out of 4). What a doozy! No one is well yet, but we are better! Warren still has a cough, but it’s a dry cough and just aggravating. It’s not constant, though, but we still have to keep a close eye on him because one cough can turn into a bucket episode in the blink of an eye. He’s been in his bed for 3 nights which is GREAT! Landon, I hope, is on the downward slope, too. His worst days were the past 2 days, but I’m thinking that today he is a bit better! The nose isn’t constant, at least, and he’s still wrestling with that cough, too. Thanks for the Vicks on the feet tip. It works!! I think I’m in the final days of my ailments, but I’m not too sure about my beloved. Daddy was the last one to get it, and I’m not sure if he’s hit his worst day yet. I hope he’s mending, but I’m just not too sure! Regardless, compared to where we were a few days ago, I’ll take it! I’ve actually gotten some sleep in the past two nights and feel like a new woman!!

Although we missed our Saturday night out, Craig and I did get a break yesterday. My dad and his fiance, Miss Kathy, came and kept our boys for virtually the entire day! It was AWESOME! Craig and I left here and had some breakfast… ran a few errands… stopped by the grave to see our boys… went bowling (FUN!!)… had a late lunch/early dinner… and really got a little break! I needed it after the week from hell and spending time with Craig without being rushed just doing whatever we wanted was simply wonderful. We both said last night what a great day we had!! Thank heavens for grandparents!

So, my darling is home with me until after New Year’s. Wahoo! Our Christmas is done, and the boys are hoping they’ve been good enough for Santa to come! Everyone is coming over here Sunday for lunch and gifts, so I have some odds and ends to contend with as the family grows and seating becomes a challenge (a good problem to have!). Craig and I already have the Christmas Eve tradition of eating Italian and watching National Lampoon’s Christmas Vacation! Ha! This year, we’re adding to it. We’re going to enjoy some Irish coffees and do our gifts to each other then, too. I’m so excited for that! That way, we have our own time to enjoy each other and relax and now Christmas morning will solely be about the kids. Perfect! I’m really looking forward to the next few days and sending you wonderful Christmas wishes, too!

Thanks for checking in. Each and every one of you is near and dear to our hearts.

With holiday blessings,

Craig, Amy, and Warren

Thanks for checking in on the McManus Infirmary Care Page. That’s what it feels like around here, at least. It’s 6:20AM, and I’m sitting alone in the den with a cup of coffee. Hallelujah! So…

Took Warren to the doctor Thursday. His chest sounded “okay”, but he was put on antibiotics for precaution. His cough is a rough one. Kiddos with CP who don’t swallow like you and me are highly susceptible to getting pneumonia which as you can imagine would be incredibly dangerous. We get everyone into bed Thursday night and around 1AM Warren wakes up coughing. I go in to give him another round of cough meds, and he’s hacking so hard that he’s trying to throw up. So, I take my big ‘ole boy into the recliner in the Rec Room where I hold him upright from 1-5AM. He sleeps pretty well; I sleep none. Friday comes and Warren’s cough is still pretty atrocious… the nose isn’t much better either. Better yet? I’m feeling a little tickle in my throat and Landon has a very slight runny nose. Yep, you can see where this is going.

By Friday night, it’s definite that I’m coming down with it and is inevitable for my baby, too. Warren sleeps with us, so every so often he wakes up coughing, and I spring into action getting him upright and settled not making for sound sleep. 3AM-Landon wakes up crying. I go to soothe him, and he’s hot. Damn. So, he and I head to the kitchen where I find him with a fever and have to distract him enough to get Tylenol in him which he despises. I have to hide it in a bottle which means he and I are reading books in the den at 3:15AM until I get him back into bed at 3:45. Follow that up at 4 with Warren constantly coughing and Landon up again a little later. The long and short? At 4:45AM, all four of us (I finally had to enlist Craig’s help) are hanging out in the den (and again, no sleep for me… 3rd night in a row).

Cut to yesterday. Warren was sounding much better during the day. Landon has a runny nose, but that’s where’s he’s staying at this point. I heard a couple of coughs last night, but I just pray pray pray he doesn’t get the cough that Warren has. That will be a nightmare. Last night, Warren’s coughs flared up again which led to him throwing up and losing his meds yada yada yada. I’ve had to regive his meds several times this week because of bucket episodes, and the worrisome part is that we may run out. They don’t give you a lot of wiggle room, ya know? Good news: met with the new pharmacy yesterday to drop off the meds and hold onto your hats people: they were NICE. What? Crazy. As long as the hours don’t give us any issues, I’m feeling really great about the change.:)

So last night, everyone slept through the night except Mommy. LOL. I know, right? That constant bedtime cough came to me last night, and I was so fearful of waking up Warren (who is once again in my bed). So, I drank cups of water… fell alseep with Halls in my mouth which I don’t recommend…. and ended up in the recliner in our bedroom at midnight to try and sit up better and not wake the boys by getting up and down constantly. The problem with our recliner is that it’s right up against the wall, so you can get the legs up but recline? Nope. Every time I tried to lie back I’d hit the wall. Ha! Oh well… it was the best night I’ve had in 4 nights, and I’ll take it. Landon woke up a couple of times but put himself back to sleep, and I didn’t hear Warren once. Yay! When I just got up, Warren and Craig were head to head. Super cute! So hard not to wake them both up with the flash from a camera. Ha! Landon is starting to roll around at 6:36 which would be his regular time. I hope he doesn’t get worse!

So, what you can probably gather is that Craig and I didn’t get our Saturday night out. Just can’t leave my babies when they’re sick. Nobody has my Eagle Eye, especially when it comes to Warren. The good news? Craig only works 2 days this week before he’s off for the holidays. I’m soooooo excited! I love it when he’s home. Wahoo!!

My alone time is waning, so I’m off to finish my last few sips of coffee before I’m on the clock! I really think Warren has turned a corner and am hoping Landon has his the worst of his (wishful thinking). Fingers crossed that Daddy stays strong, too, as he’s the only one it hasn’t hit. Hopefully, you all had a bit of a better weekend! My take? At least we should all be well for Christmas!!

Thanks for checking in!!

Craig, Amy, and Warren

I eat my words. We are not better. Cough started progressing yesterday afternoon, and we’ve been up since 3AM with it. Runny nose is back, too. Woohoo! Heading to the doc at 1:30. Fun times! Poor guy… so miserable, but trying to be happy. The whining in the middle of the night was pitiful, though. Daddy and I have a night out Saturday. Let’s get this sucker turned around shall we??

Our big guy is much better! Sunday was definitely the worst of it! He’s got a bear of a cough now, but everything is staying down. He’s not quite up to his full quantity of feedings, but I’m hoping to get there today. You can tell when that cough syrup wears off for sure! 4 hours like clockwork which unfortunately came at 2AM! Ha! I snuck in there with a little light and tried to not wake him. Poor guy… he still has some sleep to catch up on! Now, we just pray that none of the remnants have been passed on to Landon. So far so good! Warren’s nurse was also out Monday and Tuesday, so we had two 10-hour days without being able to leave the house. Whew! They were llllooonnnnggg days! We made it, though, and now things are getting back to normal. Warren’s day is crazy busy today. The school system is out this Friday, so everyone is trying to fit him in. He has 3 therapies today, and we have a case supervisor coming for her visit. From noon until 2:15, there will be at least one extra person in this house. Ugh. Oh well… once it’s over, it’s done!

Just wanted to pop in and give you a quick update. Time to feed the little one… shower… be productive during his nap… then, the troops start rolling in! Have a great Wednesday!!

Amy