How’s Warren Doing?

We finally made it to our new developmental pediatrician this morning with Warren after it was rescheduled for the fourth time. She’s right here in town at our local army hospital, so we were hoping that it would go well and we could drop one of our Duke docs that has not been impressive lately. Well, she is fantastic!! Her name is Dr. Cooper and before I go any further, as we left I said to Craig, “I feel like we did something right for our kid today.” What a nice feeling.

Anyway, questions that we have asked various doctors along the way were finally answered today. She is very thorough. One of the first things she said was how “amazing it is that Warren survived the AVM rupture… what a catastrophic thing to happen.” Our little miracle boy! Anyway, the short of it is this: she has put in an order for us to see a GI doctor at Chapel Hill, an orthopedist at Chapel Hill, a PT evaluation for aquatic therapy, a nutrition consultation, and we had 2 X-rays done today while we were there. Whew! We’ve wanted to see a GI for some time, and she didn’t hesitate… said it was “needed”. Same for the ortho. The concern with Warren and ortho is mainly in his hips. If you don’t bear weight on your legs, basically the ball and socket that is your hip can begin to slowly slip out. One of the first signs of this is when a child hunches to one side which Warren does. We cannot keep that child straight. I’m concerned about that but glad that we are taking the first steps in hopefully correcting it. If it gets completely out, it will require surgery to correct and a cast for 6 weeks. Please, oh please let us avoid that! That’s why we got the X-rays today for one. The second X-ray was of his spine, as there is a curve at the base of his spine. With his side sitting all the time and preference to keep his body facing one direction, this is to be expected but our awareness can hopefully lead to some correcting of the issue. A lot of that can be resolved with positioning. We are requesting doctors at Chapel Hill versus Duke for a simple reason: not having to fight our insurance. Since Chapel Hill is in the network, we should be able to get there a lot easier. As long as it doesn’t pertain to his brain, I’m fine to go there. It’s those brain docs that I want all in one place! Not sure how long it will take to get an appointment, but I feel so much better knowing that someone is helping us.

So, the little one did well. He pee’d everywhere during our appointment in Dr. Cooper’s office which is always entertaining. He refrained during the X-rays, as we had to kind of hold him down. He was a trooper! It’s an awful day here… cold and raining, but I managed to get him indoors, and he’s super sleepy now with a full belly. Time is ticking for his nap.

I’m not going to talk about me today because I simply don’t feel like it. We are forging ahead. Weekend seems nice… date night with my beloved tomorrow night and then of course… the Superbowl Sunday. Our MRI at Duke is next week, but I’m trying not to think about it. Sedation makes me nervous. I’ll update when we get through that. Thanks for checking in, as always.

Love,

Craig, Amy, and Warren

This will be brief because I’m in an irritated mood. Because my life sucks in the big picture? No. Just the every day annoyances that you all deal with. The latest is that no one at Lowe’s will answer the phone to tell me if my delivery is going to happen tomorrow or not. I don’t want to get up and dressed for something that isn’t coming. Trivial… yes. But still annoying. My fuse is short these days.

My easily irritated mood is probably because I’ve been on edge for the entire morning. Warren had a really big seizure this morning. The same type as always but the look on his face combined with some whining sounds had me panicked. Of course, it’s the one morning where Craig left his cell at home, so I couldn’t even call him to calm me down. He’s much better in those situations. Anyway, I scooped him up and rocked him… kissed him… talked to him… he came out of it which I knew he would, but it was still stressful for me. I’m in my PJs… barefoot… thinking that I’m completely alone on making whatever decision is necessary to keep Warren safe. I’m still not over it. He’s had one like that before several weeks ago, but this time I was home solo. I was going to run an errand or two today, but nope. Here I am. Not leaving him today. He’s been fine. Had his typical seizures like usual… is chatting and playing like usual… just napped like usual. I emailed his neuro this morning to give him a little update and see what he says. Of course, any response from him just depends on his day… is he in clinic? doing rounds at the hospital? off? Exhausted by the mysteries of Warren today.

Overall, he’s doing just fine. Got the cold out, and he’s been back in his bed for almost a week. Therapies have gone well to include our weekend therapy with Miss Julie last Sunday. She’s very confident that we can get him to sit up if we can just strengthen his lower back. She said that due to his right side affect and that he keeps those muscles contracted more, she noticed a slight curvature beginning in his spine. Ugh. He needs a lot of stretching to keep it elongated. We chatted a lot about school, too, so we’ll see how that goes. When he has seizures like this morning, there’s no way I’m putting him anywhere. MRI is on the 9th. Hopefully, we can move forward from there.

Our appt. with the new developmental pediatrician was cancelled for Monday, but they hope to reschedule for later in the week.

Other than Warren, we are doing okay. No choice but to move forward with life. I appreciate so many of you extending the offer to open up about the twins or whatever I want. I went to the grave yesterday… go about every other day right now… and they’ve laid grass now. It’s not a mound of dirt any more. I hate watching the process and am really dreading the bronze with their names coming in. The finality of seeing that is something I’m in no rush for. Otherwise for today, at least, I don’t have much more to say. Still very numb. Heart is very cold. The precious hours that Craig and I were able to spend with those two perfect babies are all the memories I have. I need to keep them for now.

Have a good weekend. We will be in the house avoiding the cold and ice. As always, thanks for checking in and keeping my family in your thoughts. ( I just reread this post before publishing it, and my words sound so cut and dry today. As I said, my emotions are buried and this post is such evidence of that)

Many thanks,

Craig, Amy, and Warren

First of all, thank you. Your love and support via messages on this blog or emails I’ve received truly mean so much. Yes, I come here all the time. If you ever scroll down and look at the counter, I’d bet that half of that number is probably from me. I read your comments on the day that you write them and often times, I read them more than once. Your words are invaluable to me. Thank you for making me feel like it’s okay to write whatever I want on this blog. I often feel that the title is too narrow, as it’s really become a place to share my family with you… not just Warren. Aggie, I so appreciate your words. Really. Sarah, you’ve kept this blog going in a way that you probably do not even realize. Many of you would be surprised that I haven’t met either one of these ladies who are so dear to my heart. It’s funny, though… in times like these, the people that you’d think would be first in line to support you are nowhere to be found, but those whom you do not even know rise up to the challenge and carry you through. Amazing. Mrs. Hanford, you wrote that this would be a soft place for me to fall. I cannot shake those words. Thank you. Everyone experiencing a tragedy needs to hear different things. That’s why there’s not a right thing to say. Some things stick and that sentence stuck with me. Amanda, writing that most of what your sister heard just pissed her off… well, same here. It’s so true. I know that so many of my dear friends are here every week, too, so I just want you all to know that you do matter and your words and willingness to stick by my family are simply priceless.

How are we? Isn’t that the million dollar question. The rhetorical answer is fine. We don’t talk about it much. Life moves on, right? Not that I think it is the best way for me to handle my loss, but I have chosen for the time being to push it far away. I go through the motions every day with little emotion. I don’t cry much these days. Even when I go to the grave, I find myself staring at the dirt with just an empty feeling. No tears. No words. I just am. People tell me how great I’m doing, and I just want to scream. I don’t, though. If you see me, meet me for dinner, run into me at the store, whatever the case… I will probably seem just fine. It’s who I am. I don’t wear my heart on my sleeve. I’ve been told for too many years how strong I am, and so I fake it and put on the “there’s nothing wrong with me” show at the drop of a hat. Just know, there is not one second in the day that I am not thinking about Collin and Miller… replaying the hospital stay over and over again… the funeral… what we should be doing… their amazing faces. I do not feel satisfied with my life anymore and that is a very empty feeling. I want all 3 of my boys. People use the word “joy” a lot, but I don’t have that right now. It’s too deep of an emotion when I only have one of my three children alive. I have happy moments, but I think joy is a long time away for me. There are a small handful of people who see through the wall I have up. My pain is at the depth of my core… not at the surface for the time being.

So, I’ve kept myself pretty secluded to avoid society. I don’t go out much. I don’t want to be around other peoples’ children when all it does is remind me of all that I’ve lost. I don’t want to run into someone who may not know what happened and ask me about them. That’s not for my own feelings but for theirs. I don’t want to make anyone feel bad for asking. Craig and I had our first experience with it probably 2 weeks ago. We were out to dinner and the waitress, who has twins herself, asked, “Do we have some babies yet?” Uh, my heart just broke for her. She didn’t know and had no way of knowing. I felt like we ruined her night. The weather has been so nice here for a few days that I’ve been able to get out and walk. My heartrate literally starts to increase as I near some houses where I would chat with people all along my pregnancy. I know that many of them don’t know, and I don’t want them to ask. I hate putting people in that situation. So, that’s why I don’t mingle too much right now; I’m not the best of company, and I know it.

That’s where we are… living. My Warren is battling another cold again. I’m not sure where they’re coming from, but this one is hanging on. It started last Friday, so we’re on day 7 right now. His runny nose Friday developed into a bit of cough that night. We were in bed, and he coughed a little. Through the monitor, he seemed okay, but I thankfully decided to check on him anyway. I barely got to his bed when he threw up everywhere. The poor baby was on his back before I did a martial arts move to flip him at the speed of light in order to get him safe. It took a couple of days for me to recover from that. What if I hadn’t of gone into his room? What if I had been sleeping? Warren can’t help himself… can’t call for me… doesn’t cry out… it just terrifies me that something more is going to happen to that child. So, you’ll understand why tonight will also be the 7th night that he’s slept in our bed (he’s a bed hog, too!). Until there’s no remnants of a cough left, he’ll be beside me. What else? His foot/ankle has recovered. He’s doing some standing on it and letting me flex it now. Our PT that comes over once in a while but whose knowledge is invaluable is coming over Sunday morning to work with him for a bit. Craig and I both love her visits. I’ve been needing to call his neurologist but have put it off again. I just fear making a change for him when he’s eating well and still pooping on his own (WOOHOO!!!). It’s inevitable, but Craig and I are still wondering if we should wait until after the MRI which is in 3 weeks. If I only had an answer for something. We are seeing a new developmental pediatrician here in town on the 1st. She comes with high remarks from everyone I have spoken to, so I’m hoping we feel the same. It would surely be great to have one of our four specialists literally down the street.

I hope that you’ve gotten your “fix” for the time being. I feel like I’ve written a novel. Someone told me last week that she’s addicted to this site. I have been addicted to others, so I get it. It’s only been 8 days since I last wrote, but it feels like a month ago. Time is still creeping along around here. Again, you are all so dear to me, and I continue to thank you for supporting and praying for our family. Our journey does continue…

Love,

Craig, Amy, and Warren… I wondered before we lost the twins if I would put their names at the bottom of each post, too, or if I would leave it just the 3 of us since this blog is about Warren? Every time I finish a post, I think about that. They are always on my mind… always.

I come to this web page several times a day but never find the words to write. Today is no different. We lost the twins one month ago today. I know that one day I will stop counting, but my life is divided into how many weeks it has been at this point. Time is passing at an excruciatingly slow rate. We were emailed the proof of the bronze for the grave yesterday and had to “okay” it so they could start manufacturing. It’s still so surreal. My beautiful little boys…

I do have one beautiful boy in front of me… cranky… biting his bottom lip… wanting out of his chair… yes, it’s my Warren. He’s doing fine. Therapies have been back as of last week, and he’s doing as well as expected after having several weeks off. I’m not caring for people to be in and out of the house as my mood can change in an instant, but I’m faking my way through it as best as possible. Warren’s had a hurt foot/ankle/calf?? for the past five days, so we’re trying to figure that out. He can’t tell me exactly where it hurts, but he’s refused to stand on it… push off of it… let me flex it for several days now. It’s getting better, but these mysteries keep us wondering. Otherwise, we’re back to normal with hs eating for the most part. Back up to about 3-4oz./day, although yesterday he was a bear to feed. The other night an hour after hour tongue thrushing phase caused him to lose his dinner, but that’s been our only episode in about a week. As you can see, things are pretty typical.

My big boy (aka Craig) is doing fine, as well. He is as amazing as ever and makes sure that I laugh every day. One in a million, my friends…

Thanks for checking in and for continuing to pray for our family.

With love and thanks,

Craig, Amy, and Warren

I’m not back… just checking in. We are doing as well as can be expected. I have an empty nursery and an empty heart, so I’m pretty much just going through the motions. Craig headed back to work today, and Warren’s therapies start back up this week. I’m struggling with all of that because it makes it seem like everything is back to normal. I’m missing two of my children, so this “old” life is far from normal in my mind. I get up every morning because Warren needs to be taken care of… that’s the only reason. I can’t continue this blog regularly until I can come to you and write about something other than missing my boys. That time has not come yet.

While I am here, my Warren is doing fine. He’s always keeping us on our toes and hasn’t given us a break from that at all. Seizures are bigger and wearing him down… tongue is still quite an issue, although he’s handling his gags a bit better… throw-ups still happen and keep us at an arm’s length at all times… continues to struggle with his morning meds, as he tried to lose them just this morning… same ‘ole, same ‘ole. My independent pooper has been gone for over a week now. Frustrating to say the least. It coincided with him being on an antibiotic, so we hope that was the issue and he’ll get back on track. Please. Warren had one of his first typical ailments over the holiday with a horrible wet cough. For Warren, he can’t control extra drainage of any kind nor can he call for me if he needs help, so he spent about a week sleeping between us for safety reasons.

He needs to get back on track with therapies, as he’s definitely aware of the attitude around this house and responding. He’s been quite a lazy boy… lethargic… napping several times a day even after we were past his sickness… not as vocal, etc. We had some friends over for New Year’s so there was conversation and laughter… and more typical atmosphere… he was wide open. It just made it clear that Warren gets the vibe and when Craig and I are ho hum, so is our little guy. We need to get him back to being perked up, and I’m not the gal for the job right now. His therapy ladies plus his CNA wll do the trick, I hope.

That’s all for now. We’ve caught up a bit, and I’ll see you again at some point. We hope that you all had a great New Year’s. May 2010 bless us all.

With love,

Craig, Amy, and Warren 

This will probably be my final post for a while… weeks, months… I don’t know. To say I am well would obviously be ficticious, so I’ll just say that we’re still on two feet and surviving. My heartache could never be conveyed through the simplicity of words. Today should have been Collin and Miller’s “birth”day, but instead Craig and I spent the morning picking out a grave marker. I am still in disbelief that God has done this to me and made me suffer as a mother… again. I am heart broken… mad as hell… barely able to move at times… can’t seem to run out of tears, but then… I look on the floor next to me right now while Warren is having a seizure and am sooo grateful to have him to live for. Thank you for letting this blessing of a child be with me for without him, well… I dread the thought.

I write this to wish you genuinely a wonderful holiday season. Don’t waste your breath wishing me one, but we know that lives continue as ours has stopped for the moment. We love each and every one of you, whether we have met you face to face or not. The cards… the emails… the messages… they are all so humbling and such a sign that if nothing else, the McManus clan is one loved family. If you have called and I didn’t answer… if you have left a message that I haven’t returned… please don’t take it personally. To be frank and honest, I’m just not in the mood. I cry enough. The lady at the monument place today as soon as I said my last name was McManus fell apart. She doesn’t even know us and just wept for our family. Our loss is great, and so please forgive me for not getting back to you.

Since this website is about Warren, he is doing just fine. Luckily, he has no idea what is happening in our family and is carrying on just like Warren does. He’s probably rolled over 5 times during the course of this email. He is my saving grace. He decided to give Mommy and Daddy something to be happy about. It’s been quite a while since I shared poop stories with you (probably thankfully to most of you), but Warren has not been an independent pooper in a year and a half. For some reason and out of the blue, he’s pooping on his own for the past week and half. In our house, that’s a HUGE Hallelujah! We do a happy poop dance around here even in the midst of our grief because that’s another little piece of Warren coming back.

Okay, I am done. I will be coping with my life for a while, so I’ll see you all in due time. Feel free to write or email any time. I do love to read messages just do me a favor… don’t tell me that God doesn’t give us more than we can handle. I believe that to be the truth, but it’s one of those that’s creeping up my nerves these days. I’m crabby and honest.

We love you and wish you good tidings for your holiday and 2010! 

An angel in the book of life wrote down our baby’s birth. Then whispered as she closed the book, “Too beautiful for earth.”          -author unknown

Many blessings,

Craig, Amy, and Warren (with two sweet angels watching over all of us) 

amy.mcmanus@hotmail.com

I found these words appropriate and wanted to keep them with me forever. We again thank you all for your prayers and support. If you are unable to attend the service or burial Friday, please feel free to come by our home. The more support the less thinking I can do. The readers of this blog are undeniably an amazing group of people. I wish I wasn’t sharing a second tragedy with you, but these are the cards we were dealt. May God continue to bless you and provide us with the strength we need to cope as our hearts are broken and lives are devastated.  The only thing that makes me smile these days… Warren.

Just For Today For Bereaved Parents

Service: Friday, December 18   Village Baptist Church   1:00 PM

Burial: Cumberland Memorial Gardens (Raeford Rd) following service

The family will receive friends at their home following the burial. 1835 Bryn Mawr Drive

In lieu of flowers the family requests that memorial contributions be made to The McManus Memorial C/O New Century Bank 2818 Raeford Road, Fayetteville, NC 28303. 

Collin and Miller were called to Heaven before their sweet lives could begin this past Sunday. Please keep my family in your prayers. Will post information on service arrangements when decided.

Amy

It’s only been two days, but I’m trying to get back on my Monday/Thursday update schedule… at least for the next week. Not sure how this will go once the twins arrive. Something tells me that they’ll be a little lapse for awhile.

Everything is fine around here. Warren is back to his 7AM wake up time, which is keeping him tired for therapy if he doesn’t nap first. Lovely. For the past two mornings, he’s tried to throw up his morning medications which is the largest dose he gets for the day. Again, lovely. This morning he managed to get a little up, but his daddy was able to stop it in progress. I was watching through the monitor and went running in to help. I thought… wish there was a video camera here with me fresh out of bed, 9 months pregnant trying to sprint through the house. Ha! Makes me laugh just thinking about it. Anyway, not sure what’s going on with that. It’s like they go in and come right up. Our system has worked so well for months. Something more to figure out.

Not too much else to report. He has two therapies today within 2 hours, so not much productivity will happen around here with that schedule. I have managed to print off the first draft of Warren’s instructions for when I’m in the hospital. I tend to call it a manual seeing how it’s 14 pages right now. Ha! That’s not 14 pages of reading… don’t worry. I realize no one would read that. I’m just trying to cover all my bases between caring for Warren and the house. The honest part of this is really if they keep him safe when he gets sick and saves the carpet if possible, I really don’t care about much else. You wouldn’t know that from my 14 pages, but that’s really what I’m thinking.

Hope you all have a great weekend! We have two weekends left, and as Craig put it… “We are doing NOTHING the weekend before the babies are born.” That means things have to happen this weekend like stocking the house from the commissary and finishing up any last minute errands… getting Christmas ready for Daddy to be able to put out… and hopefully getting the benchseat into my truck in order to get the three carseats set up. We’re waiting on parts, so please please please come in today!

Hope you guys have a great one!! See ya next week.

Craig, Amy, and Warren